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 am blessed by my supportive sister and by all of you who have walked in my moccasins shall we say, as I am walking in yours.
One less I have learned from caring for a family member is this: although I have four daughters and eight grandchildren, I do not want to be cared for by them or any other family member when I am old. I want to live in communal living or by myself with help. I would never ask my daughter to do what I am doing although two have said they would. NO WAY!!! I want them to have a life and do their thing and visit me when they want to. That's what I have learned for me...I realize this is not for everyone else...this is a lesson I learned in the past 9 months. With four daughters there would be too many personalities and advice and that's not healthy for a family. That's what I have learned. I have spoken to them and told them also...I want communal living. Although that's not for everyone, depending on personality and life style, it would be wonderful for me. And if my kids visit, ok, if they don't that's ok too. I hope to prevent the FOG for my children. I know this is early in my life to declare it but I think it is important to state my wishes now (and reserve the right to be a woman and change my mind later on ha ha).
Thanks for the hugs, ASG...once school starts I will have more focus and a goal. Until then I am able to write during my semester break. So I will write whatever crosses my mind as this is one very safe haven to come to. I appreciate my friends here; people who walk with me, not in front or behind. People who have empathy, who care, who feel the pain, share the joy, and look forward to the future with great hope. SDPeg
Actually her doc supported the move back into the house along with the support of the grieving counselor she had at the time. The memories are good for grieving. She was not moved to assisted, she was moved to independent/communal living and that is not her personality. Even her doc was shocked by the timing and the added trauma. It will take longer for my mom to grieve as she has multiple losses: my dad, her possessions that my brother threw out against her will, the control over her finances, the life she had, etc. This is not easy watching someone loss all control of her life as she had it just 15 months ago. Her doc and I work closely in showing my mom what control she does have. This eating disorder has been over 80 years ~ tough nut to crack. And trust me, other than standing on my head, I have done everything I possibly can to get mom to eat. She will not. That is the ONLY area of control she has and trying to change that at this point would pull the last rug out from under her. The horse will rebel, kick you, and I cannot afford to be down for the count. There is so much we do not know about a person, we are intricate human beings, and therefore day by day as I learn more and more I also learn to accept the things I cannot change. I cannot change another human being; I can adjust how I respond to them and that's where I am in 2012. For 15 months I have done this and that and this and that again with the same results...time to try something new. I am looking forward to the appt on the 13th-it is always a joy to be with her doc and share what is going on today, what has contributed to the present, and where mom would be best in the future. Perhaps she had a stroke. Perhaps her thyroid rx needs adjusting. Perhaps it is a multitude of things that are not related to dementia, then against maybe it is. Without her doc doing all she can for my mom, we won't know for sure. I trust the doc. That's why I wait for the next appt and see where we go from here. In the meantime, it is my school break, I have enjoyed resting and getting replenished. Each day food is set out and/or we enjoy a meal together. And each day I see her wrap her food in her napkin or throw it away. I cannot control that but I can control my feelings of sadness and frustration. I am the only sib that witnesses this, my brother is in denial that this even happens as mom lies to him on the phone, sister knows this occurs as she says mom would not lose weight if she was eating the food and she witnessed her MIL and FIL doing the same thing "at the end". So at least I have her support as a sib. That's reassuring and encouraging. And the wonderful affirming words she texts me daily keeps me going. She is extremely empathetic.
The new year will bring positive changes. SDPeg
I'm going to ring in on the eating thing, many years ago, My Mom was married to a "bast***" that molested me from the time I was about 6 till I had my first suicide attempt at 13, ate a 500 count bottle of aspirin, (being a child, didn't know it would not work) but I woke up with a nasty headache and a even nastier attitude, told him if he ever touched me again, he'd be peeing through his nose. Anyway, many years later he developed cancer of the throat, he had to eat and drink through a tube running down through his nose to his stomach, I was caregiver for this prick, I would make him homemade eggnogs, put out his ensure and make things for him to eat that might look gross but would give him the nourishment he needed, I didn't sit there and hold his hand, he would either eat it or he would not, I think that he believed I was trying to poison him as the first few days he would not. Eventually he figured out I wasn't so he started eating.
Mom never did have a normal eating pattern, the last couple of years before her death, she developed trouble with her esophagus and a lot of the time not even water would stay down. But I tried to encourage her to eat, I made things that would be appealing, I bought things I thought she could eat, she thought the chocolate ensure was too chocolate, that the vanilla was tasting like chalk, so I mixed them half and half. I'd pore them over ice (she really liked things cold) and watch her while she attempted to drink them and I would pray they would stay down. I'd make milk shakes out of them, I did this for the first year and a half, while trying to work 8 to 12 hours a day. It wasn't easy by any means, but you do what you have to do, when it got to the point that I could not do working and keeping up with Dr.'s appts for her, hubby, brother and myself along with working, I had to come home.
Hubby if left to his own devices will only eat sweets if he eats at all. The point I guess that I am trying to make is if it is possible at all, encouragement is needed for our loved ones to eat. Make the foods they will like, make it easy for them to get to and to eat, such as having it ready for them to just get out of the fridge and pop in the microwave If your loved one is still able to be alone and it's forgetting to eat, call them at lunch time and remind them.. When it gets time it's not safe, then you have to make arrangements, take a leave of absence from work or school, or look at placement or having someone to come in.
Someone said you can lead a horse to water but you can't make them drink, amen to that, you can't, you can't make anyone do something that they don't want to do. But you can rather than trying to force their heads down to the water, is bring it up to their level (be there with them) , have a drink with them, I'd make dinner for mom and me, I would sit there and have something to eat with her, she didn't feel like she was just having food shoved at her and being stuck in a corner to eat all alone. SD, you said your brother just took her out of the house and put her in Assisted, yes, I will have to admit it was shock to her system, but I have to wonder if moving back wasn't as well. She's now back where she has memories, are those memories good for her?
Anyway, I hope what I was trying to get across makes sense. Maya, I will have to say I am probably the most ornery hussy we have around here. I would send them more than thong's.. I would find a online "adult" store and send them a little something..lol.. Would keep them talking for a hundred years. Maybe have the store slide in a little note like it was from a Lover...lol..
I have been known to slap a kotex on a bosses desk and tell him he needed it more than I did. I've also been known to literally tape a persons mouth shut, I am a believer in the 3 strikes your out. I will warn a person three times what they are doing, why it bothers me and what I am going to do if they don't stop it. That is if I can't get me away from the problem. I have taped a girls mouth shut for using a high pitched whiny little voice that was not her normal speaking voice. Could not get away from her as I was working as a bartender, and she was in there on my shift... lol, if you send me a private message Maya, I can make some suggestions on what to send. you can find my facebook page on my profile.
ASG.. Docs always told mom and dad to use polysporin on their open wounds. This may be because they have many can't think of the name..what Stormys brother is having cut off. Stormy..prayers for your brother and for you!!!,
Sad story breaking my heart right now...please keep my neighbors,Jimmy and Virginia in your prayers. Doc found a couple of spots on Jimmy's lung late summer. He went through chemo and radiation..was having a hard time eating because of ulcers in throat because of where radiation had to be. Was weak but ok. PET scan showed no larger or any more spots. Then he got pneumonia..came home has had a hard time eating and getting dehydrated..he also has COPD which I should have said was when docs found spots on lung. Anyway a couple of weeks ago he was in breathing distress...he was at oncologist who sent him to hospital...while he was there his lung collapsed ...doc fixed and he was doing much better. Was not eating ..he has been on that med to make them want to eat for awhile..they doubled dose.. Things were looking up and they brought him home from hospital thinking that he may eat better at home as it was at Christmas. Well he was so weak and didn't have hospital bed at home..he was in his recliner and fell trying to get up..well they took him to er checked him out and sent him back home. He ended up going back to the hospital because he refused to eat and take his meds etc... Things were slowly looking better. But yesterday his blood pressure dropped waaaay down and they couldnt get it back up. Kids were thinking his body was shutting down. Heart doc came in and they did blood tests...he now has c.diff!! Don't think they have started any treatment yet but have given him morphine..he is soooo dehydrated. To top all this off his wife Virginia has had MS for many years...she is not totally crippled and has been so much stronger since Jimmy got sick as he was doing everything for her. Anyway the whole thing makes me sad and the c.diff makes me mad because he probably contracted at hospital. Kids haven't told mom yet..she did feel well enough to visit yesterday and they didn't enlighten her as to what is going on. She is a strong lady and a wonderful person. Well they both are. We have been neighbors for many years and have gotten pretty close.
Dad seemed to do better yesterday..still fed him and gave meds but he didn't seem to have as hard a time trying to swallow. He was not confused as to where he was and last night he kept waking us up to pee..he was aware..I felt better. Good days and bad days...
Love you guys and appreciate and pray for all of you! hope today will be the best it can.
mis, was worried about you, didn't hear from you yesterday but knew you went back to work... take care of yourself, there are only so many hours in a day, and some of them need to be for YOU.... let us know about gma.... hugs...
Oh and notlikemom, got $20 I can borrow.....lol... it's been over ten years that I have been thru the 'change' and I still get hot flashes..... good luck with that...
Stormy sounds like you and I were the 'caboose'... I am 61, next sis is 71 and next sis is 75.... they didn't listen so I dissapeared... had they been listening they would have heard me say I'm outta here.....
Seeme, it won't be long and there will be puppies... Harley and Dyna.... giving you something to hug, to fuss at for wetting on the floor, cleaning poo, that should bring back memories....but mostly the love.... it will be good to hear you really happy again.... love ya...
SDPeg, I am going to take a risk here and the worst that will happen is you get angry... we do try not to judge here, but I doubt that many on here understand you just giving your mom food and walking away, saying it is her choice.... I think part of what Jam was saying , regardless of your mom's history, as caregivers, it is our responsibility to do for them what they are not able to do for themselves...Sonny doesn't always want to eat either, but I fix his plate, and then SET there with him, having conversation, encouraging him, touching his had once in awhile....we all understand the need to take care of ourself....but there are times it is just that it isn't about US... it is about who we are taking care of.... do I get tired of Sonny asking me if it's going to rain... sure I do... but do I let him know it, NO. So possibly you need to be accountable for coming across as cold and uncaring... we can only read what you write....none of us know the full story of each others situations.... but I will be honest and say I judged you for your post about your mom not eating.... I take responsibility for how I feel about the situation... so take what you need from this and leave the rest... I won't apologize for being worried that other measures should be taken to insure she is getting nutrition.....do what you want with this.... it's just my opinion.....
Time for me to get ready and go make the big bucks..... if only that were true... hope you all stay warm where it is cold,except for notlikemom who will be standing outside... Have a good one ya'll and hugs and angels to my freinds......
I got a funny one for that grandma use to tell us all of the time a couple of years ago. A bean is a bean and pea is what?
Relief!!!!! Grandma always cracked me up. She'd always have something smart to say.
After coming home from work and letting the dog out I decided to go see Grandma. I didn't stay very long only for about an hour or so. I was just plain tired from getting up so early for work and working all day and didn't want to be on the roads to much after dark cause it's sure hard to see the snow drifts and icy spots. We didn't get as much snow as northern Michigan just about 2 inches here.
My youngest niece and I talked on the phone last night about Grandma. She said that she asked grandma if she remembered her boys while Grandma was in the hospital and grandma shaked her head no. My niece was a little hurt. It's hard for my nieces to understand what's going with grandma. I've tried to explain it them. I'm so thankful for their adopted mom (she's a nurse) and has explained to them what's going on with grandma. She's better at that than what I am.
My niece and my aunt both asked me if there was any improvements with grandma and I told them both no that there isn't.
My husband and I both have the day off. Got more appointments to go to today. The company that we both work for has been so understanding through all of this. I got to call on of my supervisors here in a bit to let him know what's going on. Well, better make some more coffee and do some reading.
Notlikemom-Let me know what they say about your mom and the scan on her lungs, as dad just had a ct scan done on his a few weeks ago. We can compare notes. ok
Jam- Wanted to ask you a ? about dads scan- Read this carefully- No signs of subpleural interstitial disease {({except})} for lung apices. What do you get out of this???? And another one is- Interstitial thickening and honeycombing at lung apices suggest pleural-parenchymal scarring rather than diffuse interstitial disease. I have read about the honeycombing of the lung and thickening so i know what all they are saying. Just wanted to get your take on these statements... Thanks
Maya- Yes we use something called moleskin on my dads ulcers under his trach plate. He has 2 now under there. I had to apply one there today. ((((Hugs))) stormyyyyyy
Got antibio's and prednisone, so in a couple of days I will be fine and climbing the walls, staying up all night to do housework. Voice is not back yet. Kathy also caught it......so far 5 that were at the Christmas Eve party have it, including her mom who is scheduled to have a knee replaced later this month. Hope she doesn't have it bad. She has to go out in 30 degree weather tomorrow for a class on the recovery and therapy. Poor woman already has a pacemaker.......
Stormy, best wishes for brother. Hope he is a good patient.
Notlike...I was given that silver sulpha stuff on mom's mastectomy incision without realizing mom was allergic to anything that said sulpha.......what a mess those blisters were........but it is good for burns, too.
Hubby is due to get up any time now and will be hungry. I hate this shift....night
ASG-neosporin is good. Just an FYI-if the sores ever don't heal well just with that, ask for a prescription for silver sulfadiazine cream. My dad gets foot sores from poor circulation (no diabetes yet), and that cream fixed them right up.
ladee-thank you for the kind words. I so need the support you all provide.
emjo-the Laundry Room might be warmer, but I'll take the cave. It should be a law that anemic people don't live with those of us going "through the change". LOL There is no happy medium here for heat!!!
CT scan of Mom's lungs tomorrow, then chemo in the afternoon. Back to real life. I found $20 in my bathrobe pocket last night...hoping it's a sign of a good year. LOL
Been missing you girlie, and love the phone and the words it throws out there, glad you come back and say what you meant to say, cause I am setting here saying " whaaaat?
Like Jam, I have a backache this evening,,, getting too old to be on my feet all day.... I think hers is from setting too much, just sayin'......
Stormy, bro will be in my prayers, let us know how things are.... does your bro work in the sun and not wear sunscreen??? And also very happy to hear dad has stopped coughing up blood... you have your hands full girl, sure wish there could be some changes for your situation...more time off to spend with Conner... Are you the youngest of the sibs??? If you are, I know how that feels, no one listened to me either .....
Marie sure has been a joy to be around, it is Sonny who has been grumpy for the past week... he seems really tired...and confused.... told her today if he continues we need to check him for a UTI, Ruth would do the same things,,,, and Joyce before her... sure have been missing Ruth alot these past few days..... good memories of her last Christmas.... maybe things have settled down enough I can cry all the tears I have bottled up this past year because I was too busy trying to survive.....
Love and hugs to all my freinds... couldn't have done this past year with out ya'll... ASG, do you remember when Ruth had the banana and the kitchen knives in her pants..... I do believe that was the highlight of my whole year..... and HB still calls me Chaquita.... gotta love it.....
Ok, my meds have kicked in, am going to bed.... later....