This seems to be a question that is not asked enough or we think what we are feeling is not as important as what our loved one is going through. This job we have taken on is a tough one and there are days when I think my "stress rope" cannot be pulled any tighter. Then there are other times that make those bad days just a memory. Do you feel like banging your head against a wall one day? And then the next day your loved one is attentive and loving and comprehends whatever you say? There are some who keep those feelings bottled up within themselves; others take the time for outside resources and others who look at sites such as this for some understanding. I do better when I have someone else to bounce my feelings off of. Let's face it....we aren't superhuman and besides ourselves and perhaps a family to take care of we now have taken on the responsibility of another human who is incapable of taking care of themselves. Do you breeze through the care giving without a problem? If so, I would like to know how you do it, maybe you can offer some new ideas; do you have feelings of frustration and need to talk about those? Come and talk and know that you can speak freely and without judgement and without finger pointing.
I am caring for my mother-in-law and have been for about 1 1/2 years. She has moderate dementia and incontinence. Other than that she is very healthy. Sometimes that short amount of time feels like 10 years and I wonder how long I will be able to do this job. I get so very tired of hearing the same thing day in and day out, but I have to remind myself that to her, each time she sees me, she is offering new information. At times I have no problems communicating with her, but it seems like more and more she cannot retain a thought longer than 5 minutes. We have had to make signs for her so she will know what she can and cannot do. So far it's working, but for how long? Maybe I will have to end up making her a "Book of Do Nots". She is on memory drugs, which don't seem to make a difference. So why do I continue to dole them out to her? I guess I'm afraid of what might happen or how she might act without them. I might have to rent a boat or buy a helmet! Sometimes I see something in her that leads me to believe that she could get aggressive and what would be my reaction to that? At the end of each and every day, after she is tucked into bed, I breathe such a sigh of relief. The "inner beast" is quiet at last, or at least for a few hours.
Pull up a chair and visit........I would like to know how you are coping everyday..be it good or with handfuls of stress.
I'm a very strong believer of "what goes around comes around, just as you do to others, it shall be done to you". So, in such bitter anger, I went to the sliding door, looked at my brother's house. I stood there, and with my whole heart, soul and mind, I said with anger: What goes around comes around. Just as you have done to me shall be done to you! Just as I experience all my health problems and have no help, so shall happen to you! Just as I am suffering these pains, so shall you! Just as I have no help with parents, so shall you with your children to you! What goes around comes around, I wish all this to you - my brother, to you- my niece, to you-my nephew (saying their names), to ALL of you! I wish with my whole heart, soul and mind. Please, please let this be so!" And for emphasis, I said it 3 times with my eyes close and wishing with all my strength.
Sigh...my 2 sisters (with their family) -whom I text asking for help monetary wise so that I can hire a caregiver for the parents every weekend (calculated $300 per persoon/month) - No Response from them. But, I didn't curse them with the what goes around comes around curse. I just was so disappointed.
Well, just today, when I got home and turned on CNN - they are evacuating Colorado Springs. I did text them a warning last week to pack all imp. docs and photos and carry it with them to work. One sis text back that fire is too far away. Well, today, they're evacuating them. Now, I feel bad. I don't think I included them in my curse that night when I was so angry. Maybe What Goes Around Comes Around is Fickle??? Anyway, my mind says it's not my fault. Fires spread, jump, etc...But I still feel sooo guilty. I just needed to write this down because I'm feeling so, so bad.
Caring for Mom long distance isn't easy but having spent those few days with her convinced me that it is the best arrangement for all of us. The new care giver just started last week. Her name is Stacey and I feel blessed to have found this agency (not a franchise) and the very supportive, compassionate director who found Stacey for us.
Mom says Stacey is nice enough but she resents having her "in the way" and "taking away" her independence. So be it. I think in time she'll learn to appreciate the company. I'm relieved because I know Mom is now having at least one nutritious meal (dinner) each day. More importantly, Stacey is a real live human being who sits and eats with Mom. Mom's hallucinated "kids" and her vision of my dad sitting at the table not eating what she has put in front of them cause her great distress and depression. Because Stacey "visits", the "kids" disappear. That upsets Mom, too. But at least she's not throwing out as much food.
So, for those of you whom I haven't had the pleasure to meet yet, you can tell we are in the earlier stages of this journey. It's been over two years now and the decline is notable in Mom's cognitive abilities. My daily conversations with Mom are often difficult because she gets agitated easily, feels paranoid when she reads the mail, and is always complaining about her hallucinated "kids" or "grand kids". The saddest part of my interactions with Mom is that she thinks Dad is ignoring her and "not coming home every night". She thinks he's mad at her or may be having an affair.
If Dad could hear her, I know he'd be crying, too. We lost Dad in 2004.
So my friends, the journey continues for all of us. One thing I know for certain: it is imperative for us, care givers, to refresh and unload in any way possible. I've missed all of you and I'm forever grateful to have found this group so long ago. Reading your posts is both encouraging and difficult. Difficult because I know our journey is only going to become more challenging. Encouraging because you all remind me that I can do this and that you will always be here.
I've done a lot of reading over the past few months. (Yes, I can read again. It's not easy and it is a bit stressful, but I can do it for short periods.) I've been reading the Mayo Clinic's Guide to AD which explains the many forms of dementia as well as AD. It has an Action Guide for Caregivers which I am finding helpful.
To those of you who are caring for your loved ones, know that your polished crown is waiting on the other side. To those of you who are coming back to help keep the rest of us encouraged, thank you.
A vacation a Walmart - now there's a concept! Hey, take some respite anywhere you can get it!
As of Thursday, I'll be going away for almost 2 weeks, part vacation and part caring for Mom. Then our 3 year old grand daughter, Taylor, will be visiting with us for 2 weeks. (Now that will be insane, caring for Mom long distance with a 3 year old in tow.) If I come back sounding nutty you'll know why! lol
Take a break and breath deeply. I'll check back as time allows. I've missed all of you. Carolyn aka Bee
I worry that when we need groceries, I have to leave her alone. Driving is a major fear for me too. Ugh I wish I had family or friends nearby that could help give me a break. She won't accept outside help and wants me to back off and leave her alone to write. I am so lost about what to do next. There is so much tension in the house...it's awful.
Your Grandmother has vision problems and your mentioned you thought they were due to cataracts and medication. You also mentioned that some time back your Grandmother had a breakdown and had to be hospitalized. Can you tell us more about that?
It seems to me like both of you could benefit from some medication. I know you are not working, but maybe your grandmother could cover the cost of a your prescription. If you could get your depression and anxiety addressed, it would make living with GM easier. Also, your GM can have cataract surgery and it would be covered by Medicare. If she could improve her vision, and get some medication to help her anxiety, maybe she would calm down and be happier.
I know there are stumbling blocks to what I am suggesting, transportation being one of them. There has to be a way. Can you call your local Area on Aging and explain that you need a volunteer to get you to doc appointments. A local senior center might also have volunteers. Ask around and maybe you can get directed to the right help.
My concern is what will happen to you when your Grandmother eventually passes away? I don't know if your Grandmother owns the house/apartment where you are living or if she has any money in the bank, but if not, what are you going to do?
I think it is wonderful that you are with Grandmother, but can you also see this time as an opportunity to plan for your future. It would be wonderful if you could get your depression and anxiety under control. That would be a big step. Have you ever contacted Social Services or Mental Health and explained your situation and that you can't work because you can't leave Grandmother and that you have no funds for addressing your own medication needs.
If you can just get one thing accomplished for your own well being, it will lift your spirits. I know it's hard when you spend time in the black hole, but this is your life we are talking about. Can you make a list of what you need to accomplish to be ready for a future. Tackle the medication issues first and then tackle the next thing.
Please don't think I am criticizing you. That is not my intention at all. I'm just concerned for your future and your ability to someday live on your own.
Sending you white light and best wishes. Cattails.
When u described ur grandmothers obsession with radio, tv and her letter writing, it reminds me so much of my father. He, too, has a terrible obsession with the tv, and sits for hours jst staring at all the bad news that is happening around the world, n i noticed that it makes his agitation so much worse. He becomes very angry and aggressive in his tone when i refuse to participate in any conversation regarding the negative topics that he is completely obsessed about. He becomes very manic n u can actually see how it is physically affecting him. It really scares me and i try everything in my power to change the direction of his conversation, but it only worsens his behaviors. I really do understand wat u r going thru with ur grandmother when u describe her obsession. It can be dangerous for them, physically, n there have been numerous times i have watched my father become so enraged that i can literally see in his face, that his blood pressure is shooting up so high, that im afraid hes going to have a stroke. On top of all that, it has affected my health, as well. I get very flushed, start shaking, become extremely nervous, and next thing i kno....MY blood pressure is thru the roof. I know how hard it is to be around someone that keeps u on edge all the time. I wish i had some advice that could help u thru that, but i dont. I jst wanted u to kno ur not alone.
I think Cattails advice is certainly the right place to start. I kno it all seems so out of reach, but u have to start somewhere, bcuz ur important and ur future is dependent on the steps u take now to protect urself later. God Bless all that u do...I believe that ur reward awaits u for all the sacrifices u have made for ur grandmother. I pray that God continues to keep u strong...n wen u need to escape...put the headphones on n turn up the volume!!!!! Many hugs
musiclover-the only possitive thing I have to add is wondering if your town has any grocery deleivery services. By me, we have Swann's, which deliver their own food, and Pea Pod, which delivers regular stuff from the grocery store. Maybe that would help? Hugs.
Not a great day. I left my meds at work Friday, and thought I could make it through the weekend with the one dose I had at home. By this morning, I was dizzy with pain. I did feel better after taking it at work, so I went to the gym tonight. The class I went for was cancelled, and I only had my swim suit with me, so no workout today. While I was there, I slipped and hurt my leg. Think I pulled a muscle. And all that doesn't even include dealing with my parents. So I came home and baked a cake.
I feel for those of you giving hands on care. I know it's coming with my parents, and it's what I do, in part, for my patients at work. But my issues right now are dealing with the independence vs. taking care of stuff for them.
When they got here, I really feared Mom wanting to take control like she had at my sister's house. She was too sick to do much housework anyway, but as she felt better, I did not encourage full-fledged cleaning. And mostly what she would fuss about, she made my Dad clean anyway. He does all the dishes, and is supposed to vacuum.
I've put up with her pointing out what she felt was messy, and making a big deal about how she cleaned it. I've tried to be supportive when they did do something, like sweeping outside. But I'm getting tired of the stove (one of the things she did a massive cleaning job on) being dirty all the time. I don't fry food, so I know it's not me leaving grease spattered everywhere. Last week she even said she had made a mess, and that she would clean it up the next day. When I got home from work, I had to clean the grease before I could cook dinner. Yesterday I vacuumed, including their room. She hasn't said a word about it, and you can tell I did it because otherwise there's always dog hair on the solid color carpet. I feel like if I have to be the housekeeper around here too, I deserve more say in their affairs. But other than scheduling appointments and dealing with the cancer docs, I am not really allowed to discuss their health, money, or how they spend their time.
I get what Musiclover says about GM's obsession with the news. Mom is totally into it. I used to try and talk to her over the phone when she lived with sis, because I knew she wanted to act smart with all she knew and no one else listened to her. When she got sick, she let the news drop, but now she's back into it. I get tired of sitting at my computer and she comes in to rail at Dad about something she heard on TV. And to make it worse, something's wong with the cable and her favorite news channels black out. Tonight she tells me they're out again, but I'm not to talk to hubby about it, because she's not complaining, and he already talked to her about it. Really, I think he told her some BS to quiet her down. But it's becoming a daily issue, and I don't know how much longer I can take it.
I feel like I'm caught in a loosing situation. I don't ask for their help around the house, because if I did, she'd either get upset with me or start telling me what to do. And she seems unable to look around and see what needs to be done herself. Almost like because I won't do it her way, she won't help at all. Meanwhile, I just get more frustrated.
Well, at least Monday's over.
If u go toward top of this page in the blue areas, their is a place in the 'Caregiver Support,' then when you hover over it with your mous you should see, 'Find Agencies on Aging." I think all u have to do is click it n put in your zip-code n it should show if their is one close to your area. These people really helped me out n even gave me a copy of their resources n what they offer and besides me taking notes for I would forget half of it if I don't write it down. All you can do is try this place n see what they have to offer for you n your grandma. Good Luck.
'PQRI list of current meds verified' $0.01 yes, I was charged .01 cents for her going over my meds. wtf? what was the $190.00 bucks used for?
Then it gets better, hold on to your seat. I am getting charge for 'current tobacco non-user CCAd, CAP,COPD, PVD' $0.01. One more, 'Screening mamogram result document review' $0.01 r u kidding me. I brought them a copy of my mamogram. I have heard of nickle-n-dime you to death but never experince the nickle-n-penny to death. Good Grief!
As far as home grocery delivery, yes we have tried Schwans but my grandma thinks they are too expensive. We don't have any other food delivery except pizza which is too salty for her high blood pressure to eat very often.
We have a local senior center but i don't believe they have those type of services. They have classes like arts and crafts, but grandma has crippled hands because of shingles years ago and arthritis. I have asked a home health agency if they had shopping or errand running services and was told they didn't have anyone available for our county. Also, our town is considering ending home health services altogether because of cost.
I wish I felt more comfortable driving to take my grandma out for a drive or to a store more often. We do have a transportation service but you have to make an appt days or weeks in advance to ride. social services did not come back or offer help.
Thanks for suggestions and hugs.
Hope you all have as good a day as possible!
I took mom to look at a house yest. jst to give her an idea of wats out there. The house was a 2 story, but each floor was like a completely separate home, so the floor plan was really an ideal set up for everyone. I was nervous taking mom to see it, bcuz shes one of those people that doesnt hide her dislike, no matter who's around. She has embarrassed me numerous times out in public, n i was really worried about how she was going to behave wen we looked at the house, bcuz, of course, the owners were there wen we did the walk thru. I would have been better off putting a paper bag over her head with cutouts for her eyes!!! Anyway, i had a long, serious talk with her in the car as we were heading over to the house. I explained to her that the owners were there, and she needed to control her facial expressions, along with the fact that she jst blurts out whatever comes to mind, no matter who is within earshot of her comment. I also had to prepare her for the moment wen she would meet my real estate agent. He's short, bald, and has a very sarcastic sense of humor. All the things that mom would sneer at, then follow it up with some insulting comment like, "You need to invest in some hair to cover up that huge bald spot." I kid u not.....she is brutal, and beyond critical n judgemental. Wenever i go to their house, she insults something about me...my hair...wat im wearing, my choice of jewlery and this all takes place within the first 30 seconds after i enter the house. It use to really upset me, but now i jst laugh it off, and realize that shes not intending to sound malicious and cutting...she jst thinks shes helping to improve all the things that she feels need improvement. I jst give her a big hug, tell her i love her, and that i wont take any of her comments personally, but there was a time that i would drive away from their house and jst have an anger fueled temper tantrum, until i jst accepted the fact that i cant change her, so i had to change the way i responded to her. I handle it all very well, now, n jst chuckle in my car all the way home..
Ok..back to the house viewing....I warned her to be aware oif her expressions and to certainly keep her mouth shut until we were alone n then she could let lose. Well...in true mom fashion, from the moment she enters this home, her face reminded me of one of those dried apple faces we use to do in pre-school as an art project.! I kept standing in front of her to try to shield the owners from her obvious dislike of wat she was seeing...then she would follow the dried apple face with her eloquent words "insult after insult". I found myself pinching her at every turn, so besides her expressions and her rude comments....i realized that we were quickly being led back to the front door with that awkward,"Thanks for coming" from the owners, n i barely escaped getting out the door without losing my flip flops!!!!
Once we get into my car, i said,"Ok, mom....dont be shy..(LOL)...jst let me have it. Her response...I HATE IT!!!!...n i dont want to move, anymore. Holy sh*t....i have to admit, i was soooo relieved that i wouldnt have to go thru that experience again.
So, with that answer, ii opened the door for me to bring up the fact that she will need in home health care to assist her in dads caregiving needs. She argued with me that she doesnt want strangers in her house, but i insisted that it was going to be a reality, and it would happen very soon. She asked me to please give her a lil more time to do it on her own, but promised me that wen it became too difficult, she would agree to in home care...I was shocked! We then proceeded to do the grocery shopping, where in usual fashion, she "apple faced" plenty of shoppers! Needless to say..it was a bit of an exhausting day with her, but i was thankful to be able to get her out of the house so she could spread her "cheer" to others, besides me...lol She's one of a kind, that's for sure. While we were gone, my husband stayed at the house with dad, but that didnt stop dad from calling us 4 times to find out wen we were coming home...He jst cant stand it wen mom is not in the house with him.
Anyway...survived the day pretty well, under the circumstances. I will b getting a slight break from all this insanity bcuz my hand surgery is on Thursday morning...n all i can say about that now is....BRING IT ON...IM SOOOO READY! I have the proper vein all picked out, n ready to go!!! lol
God Bless all of u, today..ttyl,,,love n hugs,,,
Im having a hard time dealing with her death. Somedays I cry at everything, and other days I eat everything even tho im not hungry. My aunt still wont give us girls any of Moms things so we can also have closure. we remodeled all the bedrooms, and still havent gotten things back on the walls, and now my fiance is hurt and home on workmans comp. My fav boss told me ( a week after returning to work from funeral leave) that he was transferring,had to deal with animal control on my neighbors vicious dogs and now im fighting the bank to let us have the funds from moms accts, even tho they have the paperwork they said they needed... all this within a month.... sigh
Beck, prayers for you on Surgery Day..... and in a way, glad mom has changed her mind.... at least you talked to her about getting help in the house... she'll now have time to adjust to it..... hugs to you.
Brandy, keep us posted on what's going on with Mom..... hugs to you
Stormy, let us know if you hear anything, and if ya don't, come here and bitch... hugs to you...
It is 107 here today... I have to get another AC, it is too damned hot in this house.... more later, gotta go do the split shift, but hopefully this will end soon as I told the daughter I am NOT working 6 days a week, and have lined someone up for them to meet to do evenings and Sat's...... Getting tired or waiting for them to talk it to death... it's that or daughter says they are going to a NH, S won't last 6 months if that happens and told the daughter that today..... so, more later... love ya'll
I had a long post written......started to type a letter and lost the whole thing.............
Welcome shortmomma and yes, you are welcome to join our family......the more the merrier! Tell us more about you and your situation. Condolences on Mom's passing, how long has it been? It's okay to cry whenever and wherever you want.....and who cares if somebody looks at you funny when you're standing in the middle of the grocery store! Why can't you get your Mom's belongings? We'll leave the light on for you............
beck......good luck on your surgery.....are you right or left-handed? We may need to make fun of you......love ya! Sorry you had to put up with sour-apple face while house hunting.......
stormy.....let us know about Dad as soon as you can......how have you been feeling?
For those dealing with the tv issues we had the problem with the col watching CNN, Headline news and Nancy Grace and her myriad of abused children 24/7. We noticed a trend of becoming argumentative, aggressive and depressed. We first tried changing the channel because she had lost the ability to use the remote.....we put it on the Hallmark channel and she watched so many old westerns she started pestering me to buy a horse.................but her mood improved. The next step was to lock out the channels with parental controls. That might be something you want to consider.
I was afraid to go back and reread all the posts so I'm not addressing everyone right now........might lose this for a fifth time today.........just know that I'm thinking of you all and have indeed read what you posted.
Haven't talked with the col today, but yesterday's conversation consisted of her telling us she can walk and is ready to come home and that Uncle Sam was having a parade..........alrighty then!! When we asked if he was there she said yes......what do I know......maybe he was!
Tomorrow starts the renovation of my bathroom.....taking out the shower and tub and putting in a walk-in shower......my poor old back and hips will be so happy that I don't have to step over the tub. I also bought paint for my front door......my house is painted "vanilla" with brown trim....painting the door a color called "peppery".........a little history: when we bought our house the front yard was covered in river rock...pretty but not practical since the previous owners didn't put down the correct barrier and pulling weeds was killing me. So we had the yard cemented and stamped and stained.....it looks like a rusty, iron skillet now. Some black, rust, orange, yellow, reddish/orange....so I think the door will look fabulous! I will post pics on FB when I'm finished painting.
Before I lose this I'd better click submit..............sending hugs and wishes for a good evening to everyone......may you have a little peace in your life tonight!
Ladee, you already having triple digit weather, good grief!
Stormy, I hope your dad's verdict is a good report.
Brandywine, glad u got to talk to your mom. Can they kick them out from a NH?
I hope everyone has a peaceful night as much as possible.
Jam- I will keep ya'll posted on what i learn from the dr. I have been feeling alright. I went to walmart day before yesterday and got some glucose tablets and i just pop one of those at dads til i can eat something. I just don't eat much over there. So i just have some crackers and i wolf them down before dad calls me to do something else to him. I just haven't had a chance to get to the dr this week. Maybe i will get there one day soon. Hugs to you!!!
Lil deb- thank you for thinking of me and my family. I really appreciate it. Hugs to you. Got to put jr to bed. Love and hugs to all stormyyy