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My mom use to say that ,that craziness is worst than physical illness. She would pray her mind would not go and it didn't,she died of liver cancer wiyhin just a few months. I'm not sure which is worst;I believe craziness is worst on the family and then with cancer it takes you physically piece by piece.My dad would say that being the caregiver was as hard or harder than what the patient would go though.Hardest most under apprecated job on earth he would say.no amount of money on earth is enough for what a caregiver would do......he would say. Ya'll would have liked my dad,he would have appreciated and admired each and everyone of you.He would have probably wanted to give you all a purple heart.
Pirategal, You want to talk constipation!!! Every other day Mom hyperventilates and gets on and off the toilet for hours because she HASSS to go. But nothing comes out. When it finally does, it's usually in her pants and I have to clean her. Keep in mind that the Parkinsons is at the point where she cannot walk on her own anymore, and the dementia makes her forget this fact. So I have to keep her tied to her wheelchair or rocker. So every time she says she has to go, I have to untie her and get her on the pot. Most of the time she has already gone in her pants. Daycare called the other day and she almost got thrown out because she escaped from the rosary room to go to the bathroom by herself. She has a special walker that we had to buy in order for her to stay there 3 days a week. They do not do 1 on 1 care and that is what she needs. Long story, short, she got out of her walker and into the bathroom on her own. They found her on the floor and her sh!!t was everywhere. Of course they told me she was only out of their sight for no more than 2 minutes. Yeah, right! They were pissed off because they got caught with their pants down, and had to fill out all kinds of incident reports. Of course I didn't make any waves, because I need her to be there 3 days a week. So I called the neurologist and she prescribed seraquil to slow Mom's mind down a bit. She is very OCD and won't stop all day. Today was her first day on the new med, and I could actually tell that her mind had slowed down quite a bit to where she could actually finish something she started, and wasn't going crazy over the slightest little thing being out of place. I just hope I don't get fixated on pooping when I get old!
tenn , your father sounds like my dad ! he always apprecaiate for what i do for him , thank you , good meal dear . did i hurt ur back ? im sorry . he is a kind man . theres time i can see he s wanting to lash out thats when i leave the room . leave him alone so he could be himself without hurting my feelings . a year and half ago he would say crazy things to get me fired up and i would break down crying , thats the time he wants his keys to the van , im going back to fla ! threaten me . dementia was all doing that , now he s sweet as he can be .
naheaton , ure right we should start calin her boobie321 lol . shes funny , she always makes me smile .
ah meduim s gonna be on here in a bit , i shall go watch it , love that show !
Hey, Bobbie, forget you tipping them. I'd say some of them should have been tipping you for the free show. LOL You actually forgot?! Oh, my... Do you attribute this to weariness, stress, or what?
Piratess, you dear soul. One day it will end. The end of the road is on the horizon. Stay sane, and you'll enjoy the purple heart.
We just got back from a huge marathon. The funeral was real nice, (considering the circumstances). It was a good trip with 90 year old dad. Lots of hugs and tears. Probably his last long distance journey. He looked nice in the new duds we bought him; probably the nicest he looked in years. So glad we included him. Living without regrets. Honoring the elderly among our family...what a testimony and privilege. I loved being around family, who came in from 4 states. Good to be home though.
Thanks for all the cracks about the boobies. You maniacs you.
OK.: SS: I'm so happy you did what you did for your dad. very huge and a reflection of your sweet heart. Yes, I did forget. I told you guys this stuff was catching!
I am incredibly stressed because I flew back early to be with mom because she is not good and I am scared. She has diminished so much in the week that I was gone that I want to bring her here today and have her here with me for awhile.
Pirate: you are going through the trials of Hades. Dementia is a nasty nasty disease and I hope you take care of you so you don't flip out. When a mom who has always been um... 'not pleasant' gets dementia it truly is hell on Earth. You know those of us on this thread that have experienced BPD and are now experiencing that mom with dementia have gone through our own Hells and that saying of "what doesn't kill you makes you stronger...' is total BS. I am so weak and sick after giving up my strength to my poor mom that I am having trouble handling business, etc. it's all so overwhelming.
Tennessee, that was a great post and you are a valued member of this crew! I found my dad's Purple Heart and thought of you.
Linda, you are the one who makes me laugh kiddo. Hug your sweet dad for me
Madison, thanks for your sweet words and yes here I am near the end of another parent's life and all I can do is love her love her love her. This is so sad and I am crying a lot lately. the grief and mourning go on and on because we grieve and mourn for our parents for years while they live on with this terrible disease and then when it is finished we grieve some more. I am so tired and I know that we all are so tired.
Well now I am on the West Coast and I know that I'm flying a lot because I am starting to recognize Southwest crew members and they are recognizing me.
There's got to be something funny here somewhere..... oh please let me find something funny.
Dear Bobbie, Please be gentle with yourself. Sorry to hear about your mom's decline. You have been a faithful and loving daughter, trying to take care of her, business, and live life. It is not surprising you are scared. Rest in the one who can truly comfort. Praying for your mom and you. Hope your moments together are ones to treasure, for the moment is all we have...and become future memories. Praying for your strength in the journey, sister! Hugs.
I have mom here. I had called and asked to have her ready and when I walked in she was in a wheelchair looking like she was in a heroin nod. I got down right in her face and told her that in order for her to 'get out of here' she needed to be able to walk. Turns out she hasn't been walking.
I got her up and she did a few steps so I knew she could do it. She couldn't believe that she was getting busted out and she was wobbly but we hung on to each other and the caregiver at the place (who is wonderful) really made it happen when we got her out to the car. She got up out of the chair to get in the car and she couldn't remember how to get herself INTO the car so I said: do you want me to show you? and she indicated yes so I slowly stepped into the car the way my mom has gotten into a car from forever and when i turned to see if she got it she made eye contact with me and I started crying and told her please mama get in the car and come home with me, please mama and she was trying to hug me and when I got up out of the seat, she took a beat and got into the car like I just showed her.
Her will is incredible. I just took her to the pot and she's clean and dry with a new 'special underwear' on and I am a sweating, heavy breathing mess. That's ok. so far so good and she knows that she's got to walk to get on the airplane on the 11th. I don't know if we'll make it but we're going to try. She's forgotten how to walk but she's doing well in relearning. She has to build up her muscles again and I've barked a few times Stay on your feet! while I'm holding her hands and walking backwards with her. We will get back into our routine here and I'll have a live in ready when we return... just pray that I can get her back to the east coast to her now repaired house so she can spend the last weeks/months in her own bed and garden.
She's sniffing!! after all this time that is finally music to my ears!!
We're watching another Dr. Phil (I have them stockpiled on the DVR along with Dangerous Catch) and she's playing with her extensive collection of pretty cloth napkins.
I am beat but feel less stress with her here as opposed to there because as wonderful as they are, she only sees the fact that we are not together and she was closing down. Of course, she doesn't remember that I keep telling her that we're going together so the moment I walk away she gets really bummed out.
We done 2 months of respite exactly and I think I can get us to nj and then the live in can take over the yeoman's share. Ladies, don't think I don't remember how hard this 24/7 is but if I leave mom there she will be totally gone in another few days. she and i are both reaching deep to make this happen. the Dutch are stubborn you know!
I thank you all so much for your love and support! I love the hugs! thank you thank you and SS and Linda and Miz and here we go.
Bobbie you are so great and I am sure your Mom appreciates all you have done for her and I wish for your life to get easier you are such an example for all us take care dear lady
oh i knew it ! that was what happen to my dad when he was in nursinghome . he was depressed and wasnt interetsing in makin any friends , was not into any activies , all he wanted was his family . i totaly believe that if i had left him in nursing home in fla he would have not made it . he sure was happy to come back home to indiana and enjoyed begin with me and his long lost grandkids he missed out on while they were growing up . bobbie , ur moms sounds like shes a perking up . she loves begin with you . you made her feel better . bless you sweetheart !
bobbie, no rest for the weary as they say.I rushed my dad to the ICU about every day or two to keep him alive.The only thing that was keeping him alive was some kind of heavy duty heart medicine through a IV. It had to be monitered,so we couldn't take it home with us.The staff at the hospital felt like we were takin up valuable space and he should be in a nursing home, I knew how he felt on that subject,so it wasn't a option. The medicine was destroying his kidneys also. I had saved his life so many times,it was hard to explain to him,I had ran into a roadblock I couldn't get around. I told him our only options was going to nursing home where he might have some time left hooked to IV. or being unhooked and trying to make it home.He wanted to be in his own bed. He wanted to be with me my daughter and his LUCKY dog. The doctor told me he would die as soon as he was unhooked.For 40 years doctors have been saying he would die and for 40 years we knew the doctors were full of crap,but this time was different,I had to explain to him this time was different.He asked me why they couln't fix his heart,I explained.He asked me if he was going to die this time and I said yes.I told him I just didn't know what to do now,he said lets go home,.after they unhooked him he lasted over night,but because of the red tape we couldn't get a ambulance to get home in time.The ambulance was ready about the time he took his last breathe.I only let go of his hand one time to go to the bathroom.He was a big strong man even then he held on tight. I feel so guilty for not getting him home to his dog and his house and bed. That last run to the hospital was done out of selfishness because I didn't want to lose him.Of my years of caregiving that is my only regret. I hoped you and your mom make it safely home.Every boat I see big or small I think of you and your crew.
thanks for all of the nice words and mom and I had a good time but it turned bad in kind of a funny way.....
Mom hung out in the chair, etc like I said and then she wanted to lay down for a nap. She's starting to have big issues walking and standing and we shuffled into the bedroom and I moved her to the bed like we used to do and she started to have trouble getting into the bed. OK... so we're communicating and you can see she'sreally trying to keep her act together and we have a couple short laughs and I'm tearing my a** in half holding her up with my legs (and man, this is when you love it when people say: oh...it's just like having a child!, ya right) and mom is coming in at about 135 and I tell her, mom... we're goin down.
she starts howling and down we go nice and easy. Nice fat carpet and I get her a pillow and a blanket in no time.
OK. I can't get her up and I say, screw it..let's just enjoy the nice rug and I'll call for help. I don't know who to call so I call my buddy Danny and he's a trooper and comes over and while he's on his way I get a flash of common sense and call the sheriff's office.
Seems they get this a lot. Must be a lot of old people around here. after I describe the situation the Lady on the horn goes: whaddya got? a Lift? and 5 minutes later a big red truck pulls up and 3 big fire guys stroll on in and say to me; where do you want her? and I say in the wheelchair and they get around mom and she's got a look on her face that I wish I had a camera. She starts howling again and they get a hold of her nice and gentle, pop her up in one smooth move and slide her right onto the chair. She's still howling but she's smiling at the same time, sitting in her chair with her special underwear, cute haircut and one of my linen blouses that Nik shrunk when he washed it in hot water.
She had a look of absolute wonder on her face. So cool.
The fire guys came and went and i think it was 2 minutes. Gotta love it. Thanks guys.
So now mom's in the chair and I say so: do you want to go back to the place? She's like O yeah and we look at each other and she is in there! Those blue eyes are as bright as can be. so I take advantage of the moment and tell her how brave and full of courage she is and I'm gonna get her home and we're gonna have a good time and yeah the place is the best thing because I can't wind up in traction and mom is pragmatic and for a moment saw the place as a rest stop on the road and I have to not leave her again until I get her in her house and that's the plan.
It takes 3 of us, Danny, me and Robert who was downstairs putting his trash out to talk mom into the car. she forgot how to get in and we all gave it a shot and Danny and Robert made the play and danny hopped in my side and justs lifts her the rest of the way. Now mom is starting to learn that good looking guys are moving her around and when Danny squares her up in the seat and pulls his hands away she latches on to one and will NOT let go. Danny gives me a look that is the closest I've ever seen to him crying and I say to both of them: don't freak out.
I'm sweating like the proverbial hooker in the confessional and now we have the chair in and the accessories and mom and off we go.
We get back to the place and Jill comes right out and helps with the getting out of the car and into the chair and inside and hands mom a juice and mom says clear as a bell: Why, thank you very much. The caregivers eyes got wide and they conferred amongst themselves in their own language.
It is proven that a little adventure can perk one up.
BOAT!
thank you sailors for cheering me on. It really means a lot and the lesson is this: This is a job for professionals.
When we got to the place, Jill had her on the couch and with her feet up and everything she liked around her and there you go. I told her I'd be over tomorrow with a couple BLTs and she said 'all right' in the way she used to say it. The tone is 'that sounds good'.
Almost had a stroke but I'm thankful for the time together and the fact that she came out a little.
We'll pray every night ya'll make it home. I remember once when my daughter was a baby and I was learnin to drive the wheel-chair I hit a bump in the parking lot of the clinic I took my dad to-I DUMPED HIM and my baby in the middle of the road.He didn't want to drop the baby,so he held her tight. There they were a old man and a baby sitting there in the middle of the drive.People just drove around us. I'm a good wheel chair driver now.
Hey everyone! It's been one LONG week. Haven't had time to check my computer in about a week...maybe more. Just caught up on many many posts. Can't remember who all wrote what (probably because I'm only half awake right now) but I'm so glad to hear about those of you and your families that are doing well and sympathize for those of you who are in rough patches right now.
So grandma was sent temporarily to a nursing home for a few weeks of rehab. My hubby and I thought we were planning ahead for the future by looking at private care homes now, in case things get beyond what we can handle later with her parkinsons. It was torture having her in that place. The people were great but completely understaffed and ALL of the patients paid the price for it. Grandma left there with a whole lot of sores that she didn't go in there with. Not a very great place! So we found two homes that we REALLY liked. One had 3 or 4 people on a waiting list already but the other acually had a spot available. Rehab told us she would have to be there for 6 weeks so I'm reading up on dementia and the more that I read about it, the more I realized that my house may not be...okay, is not....the best place for grandma to be. We have absolutely NO routine at home and go minute by minute. We have 2 large dogs who love to play speed racer up and down the hallway. They know that they cannot do this anywhere near her and have never had an incident but the commotion upsets her. They also love to bark at the front window....yes, the dogs and grandma. My six yr old and her friends hop and skip through the house singing and giggling and the commotion and noise upsets her. No wonder she was a nervous anxious wreck these past few months. Apparently, my house is the perfect example of WHAT NOT TO DO with people with dementia. Good to know. That explains alot. So this awesome private care home has one spot open, 4 other people looked at the room right after us and now the rehab facility says she'll be done in 1-2 weeks tops. We started flipping out about what to do. We want her here, not because I enjoy never having a life, but as a control issue. Here, I know she's well taken care of and there's stress but not worry. If we send her somewhere, there's worry but no stress. So I'm praying for guidance on what is the right thing to do. Then I get to the chapter in my book that explains how the dementia actually affects brain function. People with "heavy dementia" supposedly don't have the ability to learn new things. You're supposed to pick a permanent spot for them while they're cognitive when at all possible. This gives them the ability to learn their new surroundings and settle in better. After 2 solid weeks of complete dementia, delusions, and hallucinations.....grandma wakes up the other morning and is almost normal. ???? I'd love to know how that happens! Glad that it does, but it's bizarre. So......I got my answer. The one private care home that we would be completely comfortable putting her in is in her price range, has one spot open, she's done with rehab, and she's cognitive. God is practically slapping me in the face with an answer here! My huge fear then was telling her that she wouldn't be coming back home with us and explaining to her that she would have a new place to live. I dreaded how it would go when it came time to move her in yesterday morning. The whole way there she kept telling me how happy she was to be going home. OH NO! Do I ever feel like a COMPLETE heal at this point. Got her there and..............................she LOVED the place. She was actually smiling and happy and complimenting the place. Prayers are answered and dreams do come true.
That being said.....Bobbie, had I read your post about leaving it to professionals a month or two ago......I probably would have disagreed with you but reading it today, I completely agree. I now understand that grandma felt bad about all the things that I had to do for her but here in her new home, she doesn't have to feel bad because "it's there job to help me".
I couldn't have hoped for a better outcome. Our only saving grace in all of this is that she has the funds to pay out the nose for a top notch private care home where I can actually feel comfortable leaving her in. I really do feel for all of you who are going through all of this and don't have the funds for more than the standard nursing home. It makes for a long, tough road. Fortunately, I have faith in all of you out there who do it day after day after day not only because options are limited but because you want to. God Bless you all. I know your pain.
As a side note: Grandma moved in yesterday morning and got my first phone call from them at 11pm last night. Grandma rolled out of bed while she was sleeping (no big surpise there..does it all the time) and bashed her face off of the solid oak night stand. Two CT's and a few x-rays later, she gets the okay to go home. Nothing broken. Just a cut on her nose from insisting on wearing her glasses to bed, a goose egg on her forehead, and a real nice set of racoon eyes that will last for months (thanks to her many blood thinners). So I took her back to her new room, moved her bed against the wall (state regulation schmegulation be damned!) tucked her in and piled pillows along the open side. Problem solved. Rolled in to bed at 5:00 this morning.....asleep by 5:01. So her first night in her new home was actually spent at the ER.
I also realized something scary last night and I'm wondering if any of you have noticed this. Her dementia was mild to medium in her new room when I picked her up to go to the ER last night...this morning. Some rambling, very paranoid, not very pleasant, you know...the usual. As soon as we got to the ER, she was fine. No dementia, no confusion, talked to the doc, answered their questions. And I realized...........OMG! Grandma has become a regular here over the last year. She's been in and out of the ER so much that it has become one of her "familiar, safe places". Is that irony or what!
Well, all. Wish I could catch up more but I'm exhausted and have plans to go spend the day with her tomorrow to try to get her to mix and mingle a little more. Brain is shutting down in 5...4...3...2...1. zzzzzz......zzzzzzz.....zz zzz.....zzzz. I"m on the boat! Nite all.
Bobbie, I have a question for you but first commend you sweet Angel for the attempt you and your Mother both are making in bringing her home with you. God bless you both. I have a heart for every elderly person in the world; it isn't just over my own Mother. It's over every elderly person. My thoughts of how the elderly should be taken care of would send people in shock but that will come on another comment page someday, maybe. I take it you travel some? We all pray for who we leave our parents in the hands of and my question is not really a question but a suggestion; you are blessed if you've found a good caregiver.... Do you know the person very well or are you going by referrals? I've heard of the best referrals going bad. I've even known someone who fired a hospice nurse for something she said to my friends' mother on her death bed. So, my suggestion/question is this: In case you haven't thought of this, would it make you feel more confident about the caregiving of your Mother when you are away from her if you had cameras set up in your home, or at least the areas where your Mother would be in your home so you could go online and be able to view her and what is happening with her at any given time? It is just an idea I thought I would pass along to you. If nursing homes allowed this, I would have a camera over my Mother's bed at this moment. Good luck to you dear one and take care of yourself. You must take care of 'you' first to be able to take care of her. When you can't tote that load any longer, you just hand it on over to the Lord and He will gladly pick it up for you.
Wow, Giles, my heart goes out to you and your mom. It's tough making the decision to move them, but sometimes we have to. Even though I had to do so with my dad, I still wrestle with it. (Dreaming of taking him "outta that place..." But, he is incontinent to the point of needing several pairs of pajamas per night. This is unacceptable, IMO. Something needs to change...
I think I'll ask for yet another med review, and for some diet changes. He's also on the Seroquel, that has been in the news lately. Does anyone else have a parent on it? It says right on their labeling that it is not for the elderly, especially those with dementia, but yet that's what he has been prescribed. And they had him so doped up on Ativan, that I finally asked for it to be decreased. I find him sleeping in the hallway on their sofa sometimes, or in the dining room with his pajamas on. I abhor the lack of control, but am really not in control of much; God is. With two dads in the nursing home, an estate to liquidate 200 miles away, and a young son to raise, I can't drop it all to change Depends 8-10 times a day.
Right now, our dad's nursing home is in the news, and it's not good. They are trying to downplay some things...similar to the news spin in the media concerning political things. What an uproar. And we have two dads firmly entrenched there, without any good options.
FYI: Camera usage is prohibited in bedrooms and bathrooms...at least legally. (Which is how people get away with some things...) So what is the solution?
Giles, has your grandma ever been checked for Uti's? Mom gets them all the time, and they severely alter her personality! She also has Parkinsons and dementia, and cannot walk alone anymore. She is a handful and will need to be placed someday. In the meantime, the best place for her is in familiar surroundings, home. SS, Mom is becoming more incontinent and I have to change her a couple hours after I put her to bed at night. The parkinsons prevents her from knowing if she has to pee and then she can't always feel that she is going. I had to buy more night wear to avoid the extra clothes washing. The water bill was getting rediculous. She was just started on Seroquel this week. She was almost turned away from adult daycare because of her OCD. They do not have 1 on 1 care and she does not stop all day. No napping for her! I know about the risks, but she has to be either tied to her wheelchair or walker, or someone has to be right beside her at all times. She has had many bad falls because her mind is going too fast for her body. The med seems to have put the brakes on her brain a little bit and she is calmer than she has been for a long time. We'll see how things go after she has been on it for a while. We all do what we can to keep them safe and keep our sanity. I just hope I am not going to be a burden to anyone in the future. Take care everyone and try to take care of yourself too!
Dad's incontinence is not for urine, but fecal (gross, I know). I contemplate taking him home (4 hours away), but don't want to have to deal with that... I have seen it sliding down his pant legs and into his shoes. Now, ewwww, that is very gross!!! So, being heroine fades whenever I think of taking him anywhere. It's difficult just to get him to walk down the hallway with me. He won't go outside to sit on the swing anymore. Being outside seems to really upset him, for some reason. Poor dad! It hurts to see him this way.
Mom is getting there with her incontinence also. Had to clean the shower last week. Double yuck!!! Years ago I jokingly told her that when the day came that I had to clean her butt, she was a goner. Well, I've been cleaning up after her for 2 years now, sometimes 3 to 4 times a day. I have a weak stomach and gag easily, but sad to say, I think I have gotten immune to it. When I retell the stories of my adventures to my 6 siblings, they either laugh or say stop! The more it grosses them out, the more I tell them! Serves them right! Hang in there SS.
madison, good idea about the cameras. I'll check into it and see what I can do. I wanted to set up computer conferencing because the lady knows how to drive a computer and I have a nice one at the house with a big screen that mom could see with no problem.
if i could keep mom where she is i would but as soon as i am not there every day she begins to diminish and I think she's got some more kick in her and that's why I need to get her in her home. she is a trooper and came out here because I was certain I was going to die there with all of the stress and craziness. i'm WAY too simple for all of that stuff. BOAT!
deefer.. I gave you a star for grossing out your sibs!! love it.
SS, it is so sad and you and I both know that in our fairy tale world our beloved parents would have no buttholes and everything would be focused in their right index finger which we could stick in an empty milk jug with some duct tape around it for the fumes. I'm sure there would still be problems like when someone is a Lefty but you have to admit the milk jug would be less stressful. Of course pointing would take on a whole new meaning.
Giles, man whatta stressful deal. glad that your grandma is tucked in her bed the right way At the place here in Cali most of the beds are against the wall so the people have LESS of a chance to roll out and if they think that's an issue they pop on the side rails.
I am an only child,so is my husband and we have an only child. My mother is the only one left. She have been living with us for three years. We think the dementia has been going on for 4 to 5 years. Can't really tell what stage she is in. I am very very co dependant. I have always felt resposible for her happiness. I retired from teaching last fall. I don't know how my husband handles her and its very hard for me. She would never go to assistant living now because she wants of course she wants to stay here. She has a sister 3 years older 87 and a brother who lives 2 minute away. He never calls or anything. I am so pulled between my mother and husband. Our son and his wife has no clue about what is going on. I have lost 30 lbs ( which I did need to) but the stress is making me sick. Whats worst I know its going to get so much worse.
Dear Mr. J. I hesitated in writing this but decided that if I were in your shoes I'd want to know. For whatever reason D. did not get any money in his birthday card. I figure it was probably just an oversight. When my birthday card came with 100 dollars in it I Knew there had to be a reason why I would get money and he would not,so I figured it had to be a mistake or something. As a parent myself I know I would want someone to let me know if one of my kids didn't receive a gift while the other ones did. He hasn't said anything but I think it is botherin him. I know you don't feel well and I really didn't want to bring this up but I know you'd never hurt D. on purpose. I love him with all of my heart,and know you do too. I also wanted to let you know how much it has meant to me to be in your family. My mother died when I was 26 and my dad when I was in my 30's, so I haven't had parents for a long time. When I married D. I feel like I not only got a husband,but a father as well.You have always been good to me and I want you to know how much I appreciate your caring about me as one of your own. We will see you Christmas day. D.
this is a letter my sister-in-law wrote to my dad who I found out through my attorney wasn't suppose to make it to xmas.These people are in there mid 50's.He is a very sucessful business man.My dad was in a wheel chair and needed 24-7 care which was mostly me.By the way my father made it by the hardest to the following June,neither visited him on his birthday,fathers day,in the ICU nor did they go to his funeral. I will never forget the look on his face when he read this letter when he opened it, he actually thought it was a thank-you letter as you can read there were no thank-you. These are the people sueing me now for the farm. I know there are a lot of different personalities on here and would like some imput to how ya'll see this letter.As you can guess I see it tacky,insensitive and dispicable. My father said GOLDDIGGER as he rolled off in his wheelchair.
Tennessee! That's awful. What jerks! they're acting like outsiders who are clueless about the reality of a man's life and only see what they can get out of it.
Your father knew what was up and I hope that counts for a lot in your heart. We keep blessing that same heart for all you have endured.
Purple Heart Baby.
Hi there burton,
Welcome to the boat. this is the same boat. You know the saying: we're all in the ......
I would like to answer you in 2 parts: 1. My situation & how the site helped me cope 2. A suggestion.
I'm taking care of my mom and now she is in respite (for me) care until the 11th this month when we will try to make it back to nj. She has dementia and is in late stage where she has little control over bodily fluids but can communicate in flashes to me. This is without a doubt the hardest thing I have ever done and I have never been as upset or hurt or pissed as i was (no longer) in my early stages of caregiving for my mom.
on this site you'll see it all and hear it all and it's like watching Dr. Phil. when he puts something on that relates to the stuff you're dealing with Your'e all woohoo here comes some info.
The 'Grossed Out? Need to Vent?' thread came about because I had no other way of dealing with the issues like you are experiencing except through humor. thin line with the laughing and crying as you well know and venting your teakettle is absolutely necessary for you to survive this intact. And you can. And so can your family.
read through the Grossed Out thread and you will meet some of the most caring, intelligent and interesting women and a few good men, that you have ever met in your life. we all welcome you into our little crew because we have a collective dream of meeting each other one day and cruising on the boat. The Same Boat.
You'll find that no one really can relate to what you're feeling but another caregiver and Agingcare.com was a genius move by some thoughtful individual(s) and here we all are.
If you read through the Grossed out posts you will read the trials of putting my mom into assisted living and how it went and I'm telling you that's what you have to do. doesn't matter that mom doesn't want to go. Of course she doesn't want to go but It's killing you and your family and that's the rub. outsiders have no clue how hard this is and yes. it's going to get worse and it's a job for professionals. Start shopping for a spot. energize yourself somehow and start moving on this because if you can you need to do it.
Places have lunches and you can schedule a visit and a lunch and keep trying them out. there's some nice ones and my mom is in a board and care home that has a 3 to 1 ratio of caregivers and believe me those women are hopping! they work their butts off taking care of their 'elders'.
No doubt about it, it's going to be hard to do. We change when it hurts more to stay the same than it hurts to change.
I share some of your issues because i am an only child, however I have no children. I have no idea how my husband handled it and he did, with grace and only one hole in one door, so not bad. (I freaked out early on and shaved my head, no kidding) I also felt responsible for my mother's happiness and still do as demonstrated by my posts but I have gotten stronger since mom was placed.
In the meantime, while you are doing your research because this disease is going to march forward, believe me. You're going to get to the point where you can't pick her up and I wrote about that a few pages back....so I'm telling you, humor is key and when you realize that just about EVERYBODY here on this site is dealing with a parent or spouse and they have had some sad funny stuff happen and you just go: whaddya going to do?
Truly if you don't laugh you will cry and you will turn it inward as you try to cope. Screw it. Call the moment and laugh:
Say Grandpa has just had a bout of the HersheySquirts and there's a puddle. You have 2 choices: 1. Freak Out: start screaming and upchuck down the front of your shirt as you run to the garage and shave your head OR 2. "Call the Moment": Wow Grandpa! Whatta lake!. Oooh.. kinda shaped like Maine...Hold on I gotta throw this chair through that window to get air....nobody move....calling Haz Mat. We could find BinLaden with this stuff....jeez, etc.
If they get mad at you for finding a way to crack up tell them that it's not open for discussion. something goofy happens, I'm laughin that's it.
If you can get her into respite care so you can breathe, do it. As you know, the stress levels are unacceptable. laughing is good because it is a form of deep breathing and flushes you with oxygen which helps stress levels and if you need an anti depressant, take one, screw it. this is 2010 and we don't have to suffer.
Read through the posts and hear women talk about this stuff and i maintain that if i had it to do all over again, I would have placed mom a few years back, not 2 months ago. I had 5.5 years in at that point. When we get back to NJ we'll have a lady live in. I'm toast.
Hey everyone. Hope you all had a great weekend. Ours was slightly hectic but overall, not too bad. Went to see grandma today at the PC home and was happy to see that she was actually talking to some of the other residents. Until today, she was polite to the staff that she recognized but didn't interact at all with the other residents. It's a "memory care" home and she is not as incapacitated mentally or physically as most of the residents yet. I know it has to be pretty scary for her to see all of these other people and know that it may be her like that someday soon. I can tell that that thought has occurred to her but she hasn't said much. Today she was sitting at a table coloring with 3 other ladies, chit chatting and scribbling. She has apparently decided to take on the "motherly" role with some of the ladies who need much more assistance than her. She was trying to get them to color, picking out colors and markers for them, and telling them how beautiful their pictures were, even when they hadn't really colored anything yet. I was ecstatic. And so proud for her. I left there with much hope today. I read that one of the hardest things for older people to deal with is not just the loss of independence but the loss of being capable of doing "purposeful" things. She would always offer to set the table for me or do dishes or vacuum the floors for me. She couldn't always do it of course, but she would have loved to. And she would get mad at me when I would make suggestions of things for her to do to keep herself busy if she considered them "frivolous". I'm hoping that by looking after these other women and being motherly toward them, it will give her that sense of purpose that she has been missing so much this last year.
Deefer, Yes. UTI's have been an ongoing problem with grandma for about 2 yrs. now. She would no sooner get rid of one and a week or two later she would end up with another one. A recent trip to the ER helped tremendously. Her nurse realized, when her bladder was full and she only peed a few drops into the bedpan, that her bladder wasn't completely draining properly. They put in a catheter, drained it completely, then took the cath out and she hasn't gotten one since. They said that having that urine sitting in there and brewing was most likely why she constantly got them. And yes, her UTI's never really affected her physically (she says it doesn't "burn when she pees") but they would completely incapacitate her mentally. I could always tell when she was getting one long before she noticed any physical symptoms because I could see the crazies comin' on. But the crazies would always clear up when the infection did. Her last one was in January of this year and a few weeks after it was gone, she started acting bizarre again. I immediately had her checked again but urinalysis came back negative. She has not had another infection since but the dementia has been fairly constant since then. I know that the dementia is all part of her parkinsons but I've often wondered if her UTI's affecting her that way for so long may have brought on the dementia earlier or made it worse than it might have been without a history of temporary bouts of dementia. Who knows.
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Daycare called the other day and she almost got thrown out because she escaped from the rosary room to go to the bathroom by herself. She has a special walker that we had to buy in order for her to stay there 3 days a week. They do not do 1 on 1 care and that is what she needs.
Long story, short, she got out of her walker and into the bathroom on her own. They found her on the floor and her sh!!t was everywhere. Of course they told me she was only out of their sight for no more than 2 minutes. Yeah, right! They were pissed off because they got caught with their pants down, and had to fill out all kinds of incident reports. Of course I didn't make any waves, because I need her to be there 3 days a week. So I called the neurologist and she prescribed seraquil to slow Mom's mind down a bit. She is very OCD and won't stop all day. Today was her first day on the new med, and I could actually tell that her mind had slowed down quite a bit to where she could actually finish something she started, and wasn't going crazy over the slightest little thing being out of place.
I just hope I don't get fixated on pooping when I get old!
he is a kind man . theres time i can see he s wanting to lash out thats when i leave the room . leave him alone so he could be himself without hurting my feelings . a year and half ago he would say crazy things to get me fired up and i would break down crying , thats the time he wants his keys to the van , im going back to fla ! threaten me . dementia was all doing that ,
now he s sweet as he can be .
naheaton , ure right we should start calin her boobie321 lol . shes funny , she always makes me smile .
ah meduim s gonna be on here in a bit , i shall go watch it , love that show !
Piratess, you dear soul. One day it will end. The end of the road is on the horizon. Stay sane, and you'll enjoy the purple heart.
We just got back from a huge marathon. The funeral was real nice, (considering the circumstances). It was a good trip with 90 year old dad. Lots of hugs and tears. Probably his last long distance journey. He looked nice in the new duds we bought him; probably the nicest he looked in years. So glad we included him. Living without regrets. Honoring the elderly among our family...what a testimony and privilege. I loved being around family, who came in from 4 states. Good to be home though.
Thanks for all the cracks about the boobies. You maniacs you.
OK.: SS: I'm so happy you did what you did for your dad. very huge and a reflection of your sweet heart.
Yes, I did forget. I told you guys this stuff was catching!
I am incredibly stressed because I flew back early to be with mom because she is not good and I am scared. She has diminished so much in the week that I was gone that I want to bring her here today and have her here with me for awhile.
Pirate: you are going through the trials of Hades. Dementia is a nasty nasty disease and I hope you take care of you so you don't flip out. When a mom who has always been um... 'not pleasant' gets dementia it truly is hell on Earth. You know those of us on this thread that have experienced BPD and are now experiencing that mom with dementia have gone through our own Hells and that saying of "what doesn't kill you makes you stronger...' is total BS. I am so weak and sick after giving up my strength to my poor mom that I am having trouble handling business, etc. it's all so overwhelming.
Tennessee, that was a great post and you are a valued member of this crew! I found my dad's Purple Heart and thought of you.
Linda, you are the one who makes me laugh kiddo. Hug your sweet dad for me
Madison, thanks for your sweet words and yes here I am near the end of another parent's life and all I can do is love her love her love her. This is so sad and I am crying a lot lately. the grief and mourning go on and on because we grieve and mourn for our parents for years while they live on with this terrible disease and then when it is finished we grieve some more. I am so tired and I know that we all are so tired.
Well now I am on the West Coast and I know that I'm flying a lot because I am starting to recognize Southwest crew members and they are recognizing me.
There's got to be something funny here somewhere..... oh please let me find something funny.
lovbob
I have mom here. I had called and asked to have her ready and when I walked in she was in a wheelchair looking like she was in a heroin nod. I got down right in her face and told her that in order for her to 'get out of here' she needed to be able to walk. Turns out she hasn't been walking.
I got her up and she did a few steps so I knew she could do it. She couldn't believe that she was getting busted out and she was wobbly but we hung on to each other and the caregiver at the place (who is wonderful) really made it happen when we got her out to the car. She got up out of the chair to get in the car and she couldn't remember how to get herself INTO the car so I said: do you want me to show you? and she indicated yes so I slowly stepped into the car the way my mom has gotten into a car from forever and when i turned to see if she got it she made eye contact with me and I started crying and told her please mama get in the car and come home with me, please mama and she was trying to hug me and when I got up out of the seat, she took a beat and got into the car like I just showed her.
Her will is incredible. I just took her to the pot and she's clean and dry with a new 'special underwear' on and I am a sweating, heavy breathing mess. That's ok. so far so good and she knows that she's got to walk to get on the airplane on the 11th. I don't know if we'll make it but we're going to try. She's forgotten how to walk but she's doing well in relearning. She has to build up her muscles again and I've barked a few times Stay on your feet! while I'm holding her hands and walking backwards with her. We will get back into our routine here and I'll have a live in ready when we return... just pray that I can get her back to the east coast to her now repaired house so she can spend the last weeks/months in her own bed and garden.
She's sniffing!! after all this time that is finally music to my ears!!
We're watching another Dr. Phil (I have them stockpiled on the DVR along with Dangerous Catch) and she's playing with her extensive collection of pretty cloth napkins.
I am beat but feel less stress with her here as opposed to there because as wonderful as they are, she only sees the fact that we are not together and she was closing down. Of course, she doesn't remember that I keep telling her that we're going together so the moment I walk away she gets really bummed out.
We done 2 months of respite exactly and I think I can get us to nj and then the live in can take over the yeoman's share. Ladies, don't think I don't remember how hard this 24/7 is but if I leave mom there she will be totally gone in another few days. she and i are both reaching deep to make this happen. the Dutch are stubborn you know!
I thank you all so much for your love and support! I love the hugs! thank you thank you and SS and Linda and Miz and here we go.
More Later,
lovbob
i totaly believe that if i had left him in nursing home in fla he would have not made it .
he sure was happy to come back home to indiana and enjoyed begin with me and his long lost grandkids he missed out on while they were growing up .
bobbie , ur moms sounds like shes a perking up . she loves begin with you . you made her feel better .
bless you sweetheart !
What a day!
thanks for all of the nice words and mom and I had a good time but it turned bad in kind of a funny way.....
Mom hung out in the chair, etc like I said and then she wanted to lay down for a nap. She's starting to have big issues walking and standing and we shuffled into the bedroom and I moved her to the bed like we used to do and she started to have trouble getting into the bed. OK... so we're communicating and you can see she'sreally trying to keep her act together and we have a couple short laughs and I'm tearing my a** in half holding her up with my legs (and man, this is when you love it when people say: oh...it's just like having a child!, ya right) and mom is coming in at about 135 and I tell her, mom... we're goin down.
she starts howling and down we go nice and easy. Nice fat carpet and I get her a pillow and a blanket in no time.
OK. I can't get her up and I say, screw it..let's just enjoy the nice rug and I'll call for help. I don't know who to call so I call my buddy Danny and he's a trooper and comes over and while he's on his way I get a flash of common sense and call the sheriff's office.
Seems they get this a lot. Must be a lot of old people around here. after I describe the situation the Lady on the horn goes: whaddya got? a Lift? and 5 minutes later a big red truck pulls up and 3 big fire guys stroll on in and say to me; where do you want her? and I say in the wheelchair and they get around mom and she's got a look on her face that I wish I had a camera. She starts howling again and they get a hold of her nice and gentle, pop her up in one smooth move and slide her right onto the chair. She's still howling but she's smiling at the same time, sitting in her chair with her special underwear, cute haircut and one of my linen blouses that Nik shrunk when he washed it in hot water.
She had a look of absolute wonder on her face. So cool.
The fire guys came and went and i think it was 2 minutes. Gotta love it. Thanks guys.
So now mom's in the chair and I say so: do you want to go back to the place? She's like O yeah and we look at each other and she is in there! Those blue eyes are as bright as can be. so I take advantage of the moment and tell her how brave and full of courage she is and I'm gonna get her home and we're gonna have a good time and yeah the place is the best thing because I can't wind up in traction and mom is pragmatic and for a moment saw the place as a rest stop on the road and I have to not leave her again until I get her in her house and that's the plan.
It takes 3 of us, Danny, me and Robert who was downstairs putting his trash out to talk mom into the car. she forgot how to get in and we all gave it a shot and Danny and Robert made the play and danny hopped in my side and justs lifts her the rest of the way. Now mom is starting to learn that good looking guys are moving her around and when Danny squares her up in the seat and pulls his hands away she latches on to one and will NOT let go. Danny gives me a look that is the closest I've ever seen to him crying and I say to both of them: don't freak out.
I'm sweating like the proverbial hooker in the confessional and now we have the chair in and the accessories and mom and off we go.
We get back to the place and Jill comes right out and helps with the getting out of the car and into the chair and inside and hands mom a juice and mom says clear as a bell: Why, thank you very much. The caregivers eyes got wide and they conferred amongst themselves in their own language.
It is proven that a little adventure can perk one up.
BOAT!
thank you sailors for cheering me on. It really means a lot and the lesson is this: This is a job for professionals.
When we got to the place, Jill had her on the couch and with her feet up and everything she liked around her and there you go. I told her I'd be over tomorrow with a couple BLTs and she said 'all right' in the way she used to say it. The tone is 'that sounds good'.
Almost had a stroke but I'm thankful for the time together and the fact that she came out a little.
Thanks again for listening,
lovbob
omg so you know what I'm feeling with the panic of wanting to get her home.
tennessee: you're part of that crew!!!
lovbob
So grandma was sent temporarily to a nursing home for a few weeks of rehab. My hubby and I thought we were planning ahead for the future by looking at private care homes now, in case things get beyond what we can handle later with her parkinsons. It was torture having her in that place. The people were great but completely understaffed and ALL of the patients paid the price for it. Grandma left there with a whole lot of sores that she didn't go in there with. Not a very great place! So we found two homes that we REALLY liked. One had 3 or 4 people on a waiting list already but the other acually had a spot available. Rehab told us she would have to be there for 6 weeks so I'm reading up on dementia and the more that I read about it, the more I realized that my house may not be...okay, is not....the best place for grandma to be. We have absolutely NO routine at home and go minute by minute. We have 2 large dogs who love to play speed racer up and down the hallway. They know that they cannot do this anywhere near her and have never had an incident but the commotion upsets her. They also love to bark at the front window....yes, the dogs and grandma. My six yr old and her friends hop and skip through the house singing and giggling and the commotion and noise upsets her. No wonder she was a nervous anxious wreck these past few months. Apparently, my house is the perfect example of WHAT NOT TO DO with people with dementia. Good to know. That explains alot. So this awesome private care home has one spot open, 4 other people looked at the room right after us and now the rehab facility says she'll be done in 1-2 weeks tops. We started flipping out about what to do. We want her here, not because I enjoy never having a life, but as a control issue. Here, I know she's well taken care of and there's stress but not worry. If we send her somewhere, there's worry but no stress. So I'm praying for guidance on what is the right thing to do. Then I get to the chapter in my book that explains how the dementia actually affects brain function. People with "heavy dementia" supposedly don't have the ability to learn new things. You're supposed to pick a permanent spot for them while they're cognitive when at all possible. This gives them the ability to learn their new surroundings and settle in better. After 2 solid weeks of complete dementia, delusions, and hallucinations.....grandma wakes up the other morning and is almost normal. ???? I'd love to know how that happens! Glad that it does, but it's bizarre. So......I got my answer. The one private care home that we would be completely comfortable putting her in is in her price range, has one spot open, she's done with rehab, and she's cognitive. God is practically slapping me in the face with an answer here! My huge fear then was telling her that she wouldn't be coming back home with us and explaining to her that she would have a new place to live. I dreaded how it would go when it came time to move her in yesterday morning. The whole way there she kept telling me how happy she was to be going home. OH NO! Do I ever feel like a COMPLETE heal at this point. Got her there and..............................she LOVED the place. She was actually smiling and happy and complimenting the place. Prayers are answered and dreams do come true.
That being said.....Bobbie, had I read your post about leaving it to professionals a month or two ago......I probably would have disagreed with you but reading it today, I completely agree. I now understand that grandma felt bad about all the things that I had to do for her but here in her new home, she doesn't have to feel bad because "it's there job to help me".
I couldn't have hoped for a better outcome. Our only saving grace in all of this is that she has the funds to pay out the nose for a top notch private care home where I can actually feel comfortable leaving her in. I really do feel for all of you who are going through all of this and don't have the funds for more than the standard nursing home. It makes for a long, tough road. Fortunately, I have faith in all of you out there who do it day after day after day not only because options are limited but because you want to. God Bless you all. I know your pain.
I also realized something scary last night and I'm wondering if any of you have noticed this. Her dementia was mild to medium in her new room when I picked her up to go to the ER last night...this morning. Some rambling, very paranoid, not very pleasant, you know...the usual. As soon as we got to the ER, she was fine. No dementia, no confusion, talked to the doc, answered their questions. And I realized...........OMG! Grandma has become a regular here over the last year. She's been in and out of the ER so much that it has become one of her "familiar, safe places". Is that irony or what!
Well, all. Wish I could catch up more but I'm exhausted and have plans to go spend the day with her tomorrow to try to get her to mix and mingle a little more. Brain is shutting down in 5...4...3...2...1. zzzzzz......zzzzzzz.....zz
zzz.....zzzz. I"m on the boat! Nite all.
When you can't tote that load any longer, you just hand it on over to the Lord and He will gladly pick it up for you.
I think I'll ask for yet another med review, and for some diet changes. He's also on the Seroquel, that has been in the news lately. Does anyone else have a parent on it? It says right on their labeling that it is not for the elderly, especially those with dementia, but yet that's what he has been prescribed. And they had him so doped up on Ativan, that I finally asked for it to be decreased. I find him sleeping in the hallway on their sofa sometimes, or in the dining room with his pajamas on. I abhor the lack of control, but am really not in control of much; God is. With two dads in the nursing home, an estate to liquidate 200 miles away, and a young son to raise, I can't drop it all to change Depends 8-10 times a day.
Right now, our dad's nursing home is in the news, and it's not good. They are trying to downplay some things...similar to the news spin in the media concerning political things. What an uproar. And we have two dads firmly entrenched there, without any good options.
FYI: Camera usage is prohibited in bedrooms and bathrooms...at least legally. (Which is how people get away with some things...) So what is the solution?
SS, Mom is becoming more incontinent and I have to change her a couple hours after I put her to bed at night. The parkinsons prevents her from knowing if she has to pee and then she can't always feel that she is going. I had to buy more night wear to avoid the extra clothes washing. The water bill was getting rediculous. She was just started on Seroquel this week. She was almost turned away from adult daycare because of her OCD. They do not have 1 on 1 care and she does not stop all day. No napping for her! I know about the risks, but she has to be either tied to her wheelchair or walker, or someone has to be right beside her at all times. She has had many bad falls because her mind is going too fast for her body. The med seems to have put the brakes on her brain a little bit and she is calmer than she has been for a long time. We'll see how things go after she has been on it for a while.
We all do what we can to keep them safe and keep our sanity. I just hope I am not going to be a burden to anyone in the future. Take care everyone and try to take care of yourself too!
madison, good idea about the cameras. I'll check into it and see what I can do. I wanted to set up computer conferencing because the lady knows how to drive a computer and I have a nice one at the house with a big screen that mom could see with no problem.
if i could keep mom where she is i would but as soon as i am not there every day she begins to diminish and I think she's got some more kick in her and that's why I need to get her in her home. she is a trooper and came out here because I was certain I was going to die there with all of the stress and craziness. i'm WAY too simple for all of that stuff. BOAT!
deefer.. I gave you a star for grossing out your sibs!! love it.
SS, it is so sad and you and I both know that in our fairy tale world our beloved parents would have no buttholes and everything would be focused in their right index finger which we could stick in an empty milk jug with some duct tape around it for the fumes. I'm sure there would still be problems like when someone is a Lefty but you have to admit the milk jug would be less stressful. Of course pointing would take on a whole new meaning.
Giles, man whatta stressful deal. glad that your grandma is tucked in her bed the right way At the place here in Cali most of the beds are against the wall so the people have LESS of a chance to roll out and if they think that's an issue they pop on the side rails.
Jeez sailors we need a break. BOAT!!
lovbob
I am very very co dependant.
I have always felt resposible for her happiness.
I retired from teaching last fall.
I don't know how my husband handles her and its very hard for me.
She would never go to assistant living now because she wants of course she wants to stay here. She has a sister 3 years older 87 and a brother who lives 2 minute away. He never calls or anything.
I am so pulled between my mother and husband.
Our son and his wife has no clue about what is going on.
I have lost 30 lbs ( which I did need to) but the stress is making me sick. Whats worst I know its going to get so much worse.
this is a letter my sister-in-law wrote to my dad who I found out through my attorney wasn't suppose to make it to xmas.These people are in there mid 50's.He is a very sucessful business man.My dad was in a wheel chair and needed 24-7 care which was mostly me.By the way my father made it by the hardest to the following June,neither visited him on his birthday,fathers day,in the ICU nor did they go to his funeral. I will never forget the look on his face when he read this letter when he opened it, he actually thought it was a thank-you letter as you can read there were no thank-you. These are the people sueing me now for the farm. I know there are a lot of different personalities on here and would like some imput to how ya'll see this letter.As you can guess I see it tacky,insensitive and dispicable. My father said GOLDDIGGER as he rolled off in his wheelchair.
That's awful. What jerks! they're acting like outsiders who are clueless about the reality of a man's life and only see what they can get out of it.
Your father knew what was up and I hope that counts for a lot in your heart. We keep blessing that same heart for all you have endured.
Purple Heart Baby.
Hi there burton,
Welcome to the boat. this is the same boat. You know the saying: we're all in the ......
I would like to answer you in 2 parts:
1. My situation & how the site helped me cope
2. A suggestion.
I'm taking care of my mom and now she is in respite (for me) care until the 11th this month when we will try to make it back to nj. She has dementia and is in late stage where she has little control over bodily fluids but can communicate in flashes to me.
This is without a doubt the hardest thing I have ever done and I have never been as upset or hurt or pissed as i was (no longer) in my early stages of caregiving for my mom.
on this site you'll see it all and hear it all and it's like watching Dr. Phil. when he puts something on that relates to the stuff you're dealing with Your'e all woohoo here comes some info.
The 'Grossed Out? Need to Vent?' thread came about because I had no other way of dealing with the issues like you are experiencing except through humor. thin line with the laughing and crying as you well know and venting your teakettle is absolutely necessary for you to survive this intact. And you can. And so can your family.
read through the Grossed Out thread and you will meet some of the most caring, intelligent and interesting women and a few good men, that you have ever met in your life. we all welcome you into our little crew because we have a collective dream of meeting each other one day and cruising on the boat. The Same Boat.
You'll find that no one really can relate to what you're feeling but another caregiver and Agingcare.com was a genius move by some thoughtful individual(s) and here we all are.
If you read through the Grossed out posts you will read the trials of putting my mom into assisted living and how it went and I'm telling you that's what you have to do. doesn't matter that mom doesn't want to go. Of course she doesn't want to go but It's killing you and your family and that's the rub.
outsiders have no clue how hard this is and yes. it's going to get worse and it's a job for professionals.
Start shopping for a spot. energize yourself somehow and start moving on this because if you can you need to do it.
Places have lunches and you can schedule a visit and a lunch and keep trying them out. there's some nice ones and my mom is in a board and care home that has a 3 to 1 ratio of caregivers and believe me those women are hopping! they work their butts off taking care of their 'elders'.
No doubt about it, it's going to be hard to do.
We change when it hurts more to stay the same than it hurts to change.
I share some of your issues because i am an only child, however I have no children. I have no idea how my husband handled it and he did, with grace and only one hole in one door, so not bad. (I freaked out early on and shaved my head, no kidding)
I also felt responsible for my mother's happiness and still do as demonstrated by my posts but I have gotten stronger since mom was placed.
In the meantime, while you are doing your research because this disease is going to march forward, believe me. You're going to get to the point where you can't pick her up and I wrote about that a few pages back....so I'm telling you, humor is key and when you realize that just about EVERYBODY here on this site is dealing with a parent or spouse and they have had some sad funny stuff happen and you just go: whaddya going to do?
Truly if you don't laugh you will cry and you will turn it inward as you try to cope. Screw it. Call the moment and laugh:
Say Grandpa has just had a bout of the HersheySquirts and there's a puddle. You have 2 choices:
1. Freak Out: start screaming and upchuck down the front of your shirt as you run to the garage and shave your head OR
2. "Call the Moment": Wow Grandpa! Whatta lake!. Oooh.. kinda shaped like Maine...Hold on I gotta throw this chair through that window to get air....nobody move....calling Haz Mat. We could find BinLaden with this stuff....jeez, etc.
If they get mad at you for finding a way to crack up tell them that it's not open for discussion. something goofy happens, I'm laughin that's it.
If you can get her into respite care so you can breathe, do it. As you know, the stress levels are unacceptable.
laughing is good because it is a form of deep breathing and flushes you with oxygen which helps stress levels and if you need an anti depressant, take one, screw it. this is 2010 and we don't have to suffer.
Read through the posts and hear women talk about this stuff and i maintain that if i had it to do all over again, I would have placed mom a few years back, not 2 months ago. I had 5.5 years in at that point. When we get back to NJ we'll have a lady live in. I'm toast.
Assisted Living Time. Choose Husband.
lovbob
Deefer, Yes. UTI's have been an ongoing problem with grandma for about 2 yrs. now. She would no sooner get rid of one and a week or two later she would end up with another one. A recent trip to the ER helped tremendously. Her nurse realized, when her bladder was full and she only peed a few drops into the bedpan, that her bladder wasn't completely draining properly. They put in a catheter, drained it completely, then took the cath out and she hasn't gotten one since. They said that having that urine sitting in there and brewing was most likely why she constantly got them. And yes, her UTI's never really affected her physically (she says it doesn't "burn when she pees") but they would completely incapacitate her mentally. I could always tell when she was getting one long before she noticed any physical symptoms because I could see the crazies comin' on. But the crazies would always clear up when the infection did. Her last one was in January of this year and a few weeks after it was gone, she started acting bizarre again. I immediately had her checked again but urinalysis came back negative. She has not had another infection since but the dementia has been fairly constant since then. I know that the dementia is all part of her parkinsons but I've often wondered if her UTI's affecting her that way for so long may have brought on the dementia earlier or made it worse than it might have been without a history of temporary bouts of dementia. Who knows.