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.
thanks
You shouldn't feel uncomfortable in your own home. There's no worse feeling. To me, that's a sign that somethings got to give, to change.
I believe in caring for th elderly. I believe it's a good thing to keep them in their own homes, at least in the beginning/middle stages of alz, if that's possible. But I don't think people should take this job on by themselves, or be required to ever look after an advanced alz patient alone. That was a scary ride for me personally. I had to handle and deal with things that I wasn't medically, or mentally, equipped to handle. Maybe I'm just a wuss, but I feel completely battered mentally after this whole journey. I'm not one of those types that runs to the doc to stock up on the latest new meds. The younger crowd especially in today's world seem to have their own small pharmacies going if what I'm hearing in other forums is any indication. I'm not one to do that. I don't like taking too many meds. But right now, I feel I should be on something. It's like I'm completely falling apart right now to the point where I can't function. I've been out of the loop so damn long there's a part of me that's scared to death at the thought of having to get out in this alien place... The energy it's going to require for me to get to that point is a lot more than I have. My reserves of everything are dried out. I'm one hell of a mess. All I want to do is be left alone, be quiet and rest and sleep. I feel a need for healing on so many levels.
Care givers need a whole lot more help than they're getting, that's simple truth. Again, I believe in caring for the elderly and making sure that they're looked after, making sure they're safe and comfortable and aren't alone. But there should be so much more help, so many more options, for the elderly so that care givers don't find themselves one step away from keeling over. Hard road, indeed.
I'm glad the doc in the other thread is here now. It makes me feel as though someone really CARES what's going on with elderly people and their families and will really listen to the people here about what it's really like being locked behind closed doors with them . Most people have no clue what a care taker of an elderly alz/dementia patient deals with every day, or what kind of workload that is, or how many working, yes working, hours that really translates into, or what it's like to be on call 24/7, for months, years. No company in the US could legally work you as hard as you'll work in the care giver role, nor could they ever get away with working you 100+ hours a week, and a lot of times without pay. That's pretty much what it comes to. Nobody should have to work that hard, that long, ever. The consequences for the care taker is just too d**n high. Doctors shouldn't just be looking into what's good for the elderly, they should be taking a good, long look at their care takers. I don't think doctor's really think about the repercussions to care takers who are literally chained in an alz world, sometimes for years. That's bound to induce a little crazy to come out of just about anybody. And thank God you guys understand that kind of crazy. :)
Anyway, I have no idea what got me started on that little tangent... I'm tired, frazzled and babbling.
It would be nice if, as care takers, we got at least two days off a week, like any other job. Some parents don't like or enjoy an adult daycare. Aides aren't nearly enough. I guess I'm wishing for the moon. And what about some courses adult kids could take that could, in some way at least, prepare them for alz and dementia? Nothing can really prepare you for that ever changing alz world, but it might give people like me enough of a head's up that we aren't left feeling like we've just come out of a torture chamber... Alz, to be honest, was a little too much harsh reality for me. Too painful. Too sad. Too...everything. It's an experience, for all I've learned from it, I wouldn't have minded doing without. I would have loved to have remained blissfully ignorant.
Hope the day is smooth and quiet for all of you!
m sure that's scary at any age but at 91 she no longer has the coping skills to deal with any of it. I don't want to take the thing away from her and have her actually need me and not be able to call...just running in circles (literally) and wondering if anyone else had dealt with this...
One thing I did while Ruth was being scared and lost. I got her a stuffed animal... something really soft... sometimes if I got her to hold it and talked to her a minute or two she would go back to slhugseep.... does she take anything to help her sleep???? Many people are using Melatonin to help the elders..... I see side effects that I don't like, but it does help them to sleep.... hope you get some rest soon....hugs and chocolate...
At a certain point I think all the elderly, especially alz/dementia patients, get more clingy because they're declining, they're aware of it on some level and they're afraid. I couldn't blame my mom, but that didn't make it one iota easier to deal with. It got really rough at that point. Sleep issues were popping up. Man. That was a rough patch of road for awhile... And then add a whistle into the mix? Oh please no...
Actually, Key Lime Pie sounds even better atm... :)
And yeah, keeping another grown adult fresh and clean takes it's own physical and mental energy. Once I got my mom on a routine of activia it got interesting to say the least. Nothing else was working for her constipation and I was trying everything I could think of, to no avail. The meds from the doc weren't doing much. I finally got really desperate and worried and bought activia thinking it couldn't hurt... it didn't hurt, it helped. A lot. OMG. It was a mess. But it was a relief, too. It couldn't have been good for her to be that stopped up and it didn't seem like doc's were really looking into much, like they just brushed it off when I'd mention her complaints about constipation and that I thought the issue was getting serious... It was frustrating and scary for me not to be taken seriously. I expected tests to be done at that point, but the doc would just prescribe some other med that didn't work... Thank God the activia did. She was fine and pretty regular after that. But yeah, it was like she hadn't gone in years and now suddenly was. I was pissed at the doctors who didn't listen all over again. All residents who came and went constantly and didn't know squat about a patients background and didn't seem to care much.... Very frustrating.
But man, what a relief for me when something really helped. And yeah, keeping her clean at that point was very hard. She couldn't/wouldn't get in the shower, sponge baths weren't enough and she really couldn't stand on her own too long. For a little while with her walker and with aid from us, yeah, but not nearly long enough to get much done. Sean and I ended up with a strategy that worked pretty well, which involved the kitchen sink and sink sprayer, but Sean and I had to hold my mom's weight between us to really get her washed. There were days my back felt like it was burning and I did manage to throw my back out a couple times lifting my mom. The doc thought that I tore a muscle in my chest once after trying to lift her... Yeah, it can become very, very difficult. After a certain point, it feels like you have to do contortions to deal with them and the ever changing new issues that crop up more and more often...
I think it's just about improvising with the elderly. If one thing doesn't work, try something else. Sometimes, that's all you can do. I'd have had to come up with an alternative to a whistle..
I'm really glad your hubs steps up to help you out, RD. He should be. Thank God you can get breaks in. We all need that and must make the time or find a way to get the time for that, at all costs. Even if it means making some other arrangement the parent might not be thrilled with. Even if it's just a day or two. Ok, one day. Hell, there were times I'd have been thrilled with a few hours... Care givers that can recharge are just better all around care givers, at least I found that to be true in my case. If I could rest, I was just more patient. Zombies don't make good care takers. Walking around in a sleep deprived stupor, on auto pilot, dealing with an elderly person who's on a lot of meds, is a recipe for disaster. Towards the end, my son's had to become involved. Or somebody did. I couldn't handle my mom alone. I really needed and required, for my own well being and sanity, time away from those harsh, ugly, unyielding realities. Peace of mind and quiet time alone without constant demands and pressure shouldn't be a luxury. Nobody should ever even attempt to try and go on this journey alone... Even in the middle of a war you have to make some good somewhere, sometimes...
I'm thinking a day or two at the beach is in order. I'm waiting on some good weather. It's been raining, freezing and gloomy for the past couple days. It's not helping my mood any.
I want to get up at 4-5 a.m, go down to the beach with a hot cup of coffee, a thermos with some hot tea and listen to and watch the waves. For hours. And nothing else. Just that. Heaven. I plan to do that when this bad weather blows over. I do miss the ocean.
I like the idea of stuffed animals. We tried that. I wish it would have worked with her, to soothe her. Had my mom been happy with them, or had they worked to calm her, I would have gone out and gotten her an entire mountain of them. lol Let us know if you get good results.
Have a good one everyone...
We, the family, would put out most of the food. But our custom is that when you attend, you bring something to the table. So, that's why we would have 2 of the same food.
My dad did NOT know about the mass this past 9 days. He did Not even know that they were having the mass for mom this morning and that the dinner for tonight. When I mentioned it to him this morning, he was surprised. But very touched that my SIL did all that for mom.
Of mom's 6 siblings here on island, only 2 came in to speak to my father. This is the same thing they did when my mom was still alive and bedridden. Most of them would sit outside and not come in to see mom. So, when my mom died, I had NO sympathy for my mom's siblings. When mom was close to death's door, I asked my siblings if we should let mom's sisters/brothers know that she's close to the end. They all said no. Since mom had her dementia 24 years ago, her siblings rarely visited. When she was bedridden, they rarely visit. When mom's baby sister told me that she regretted not coming to visit mom more often, I said nothing to comfort her.
Oldest sis is not feeling well. She looks so tired. I've decided that when I get off work early on some Wednesdays, I will not use that free time to buy things for the house. I will just come home early and let sis have an early off. It's back to like me and dad caregiving mom. then dad had a stroke. Now it's me and sis caregiving dad, and one of us might have the stroke. Since I have my job to get away from dad, oldest sis doesn't even have that option. So, I've decided to relieve her so that she can rest. Plus I'm really really worried that if she has a stroke, then I'm back to caregiving for 2 people!
If only it would last forever!!!
I'm lucky in that I love my Mother-in-Law. She's only 6 years older than me and we get along great. When we go out together folks assume we're married and we sort of act like it because we're so close. My wife rarely goes with us as her chemo treatments have robbed her of energy. Nothing in my past suggest I'd be any good as a caregiver, but I've surprised myself. I don't know why, or how I do it but I'm really good at "taking" her never ending questions. Telling her it's Monday for the 35th time doesn't rile me like it does my wife. LOL Even after a year and a half of this I can still "take it" and smile.
I retired early to take care of her. My retirement was ment to be spent riding my motorcycle around the country, attending off-road events and sailing around the Gulf. It hasn't worked out that way! We are "joined at the hip" and I rarely get a chance to ride any longer than to breakfast with a few friends on sunday. I'm not bitter but I do miss riding and sailing. Haven't sold bikes or boat yet ...........
What I'm starting to feel is "caregivers fatigue" and I don't know what to do about it. I'm also worried about my own health. I'm very lucky to be very healthy for a 71yo and I'm the type of person who enjoy's stress but, I know I ain't seen nothing yet. I know down the road this job will get a lot ahhhhh "dirtier;" I have no fear about what's going to happen; I just hope I can handle it as well as many of you. Also, when her fear turns to anger, and it's directed at me ..... I have a hard time with that. I know she's got a brain problem yet I let her push my buttons and I end up allowing myself to get angry too; doesn't help at all.
First thing you will learn is to take care of yourself. While MIL is still in fairly good health make time to ride your bike and go sailing. Even if you have to hire a caregiver for a day or two try and make the time. Also try and make alone time with your wife. She may not be much fun at the moment but she has been through a lot and needs to be cherished and seeing you haveing fun with her mother must raise some questions in her mind.
Have you made sure that all the paperwork and legalities are in order for all three of you. have you consulted an elder care lawyer,done the wills and gotten POA sorted out both medical and financial. no good waiting till one of you gets too ill to make decisions. Are there other family members who can step in to help from time to time. Just a few thoughts from someone your MILs age. Blessings.
come back and join us.... you will make some great friends here, we even laugh once in awhile... and hey, you don't want to miss that now do ya???
Hope we see you soon.... sending hugs, prayers, angels, and I usually send 'chocolate' but in your case will send a 'six pack'.... !!!!!! will be great to have a man's perspective.... hugs..
Photoartc
0 mins ago
So many people on this site so totally understand and empathize with your de lima... I wish I had the answers for you as well as myself.
My Mom wanted me to sit with her and watch TV "because she was lonely" .. I just got up to do some chores... I told her that I can't sit there all day. I also informed her that I have made suggestions for company as in the Senior Ctr or bringing in Home Care but she refuses..
I guess my point is should I have reminded her of her refusal to do other activities? I feel bad but not that bad...
So many of us would like to give them options, hoping that they will pick the one that is good for everybody. My mom lost her choice two years ago when I started taking her to a day program. She never would have understood that it is very good for her to have this activity and in turn good for me to get a few hours of the day without her. She can rely on other people for a little bit which is a tremendous boost for me. I know there are others that I can count on that I do not have to do this all myself, nor would my mom have ever wanted me to do this without help. She was usually a fair woman and would never have wanted the care of her to fall to just one of her children but, that is what has happened in this family.
A&A, you need to take care of yourself. Do not give your mom an option of having others help you with her. Give her the option of either a facility or you and the team you choose to hire.