Do I s*ck at caregiving?
Comments
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I am caring for my husband with "baby-sitter' help to make sure the house doesn't burn down while I run errands, My sisters say I am doing a horrible job because I don't force him to shower or brush his teeth believe me, I try. Toothbrush is always loaded and next to the sink - I provide verbal and visual cues and he says "I'll get to it"
It's stressfull enough without feeling like a caregiving failure.
Has anyone else felt this way?
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Yes!! I have the same feelings all the time. I have never felt that forcing him to do those things was a good idea, but sometimes I wonder if I should. Everything I read says to make the showering, etc, as pleasant as possible, (warm the water first, hot towels, etc) but nowhere does it tell you what do do if all that fails. I use soft washcloths and rinse free soap and try to wash a few body parts at a time or have him do it, but sometimes he just runs away from me. I’m lucky if I can get him to brush his teeth for more than a few seconds. But if I try to force things, I’m afraid he’ll just get more resistant when he sees me coming. I’ll add that I’ve always been a “conflict avoider” so it’s all-around hard for me. Hopefully others have some better advice!
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- You are my caregiving twin.
- My sister said to me today, 'you obviously don't love him' if you let him stay in bed.
- I educate myself as much as possible but there really is no road map.
- His daughter sent me an email this week that salt water could cure dementia.
Leave a C4 -
I think a lot of people feel that way, and a lot of families are very critical without being very helpful. When you are doing the work and other people are undercutting you, it's not your care that is the problem. If they are not walking the walk, they are just talking and should be ignored.
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There are wonderful 'rinse free' shower caps you can find on Amazon. 10 seconds in the microwave, and then a nice scalp massage. My 'not right now' husband actually enjoys it.
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Thank you for this.
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Some were born to be caregivers, but for most of us it was thrust upon us and we do the best that we can. There is no one size fits all answer for how to do this, each of our LO's have different personalities and different needs. whats more, those needs can change day by day. Pay no attention to those who would criticize, they know no better. You will have failures but you will also have small successes, take credit for those, pat yourself on the back once in a while.T
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You are fantastic, you are brilliant always remember that, anyone who ends up doing this job should be recognised. Criticising is oh too easy and shouldn’t be listened to. I don’t know why people, especially those we are closest to, feel they have the right to criticise and tell us what we should or shouldn’t be doing. With the amount of stress involved loosing your DH little by little, the lack of sleep, the sheer amount of work and the isolation we become so vulnerable and an easy target. I shower with my DH I use a large colourful body scrubber (so I don’t actually have to feel his skin too much) and a lovely smelling medicated piece of soap. Then my turn on my own while he sort of dries himself?? It works for us good luck and buzz the critics off.
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Ask everyone offering the critiques to come on over and show me how to do it. Or better yet can he come to your house for a few days so they can practice.
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I pick my battles. My DH brushes his teeth at a hit and miss rate. Why start a fight? He stays in his robe longer each day. Today I told him I was going to vacuum (he hates that) and he could go take a nice bath while I got that done or stay on the couch. It worked today, it doesn’t always. I’m lucky we haven’t reached the point of no bathing. He’s always loved baths, but now he waits 2-3 days in between. Until someone has walked in my shoes they don’t get to criticize me. At least not to my face (smile)
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They just don’t get it. How it is when you constantly remind them. They are resistant and you don’t see any point. In forcing them I understand. My husband is very withdrawn and I have tried. To get him to enjoy some activities he can still do. He really is not very interested. So I give up on suggesting them.
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Yes. My DH will not take a shower. He is not interested in doing anything, except feeding the squirrel and birds.
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It is easy to visit for an hour even though most don't even do that, but living it 24 hours a day is a whole different thing. Even if you could get them to take a bath every day why is that worth the stress on either of you. You only have so much energy and that battle every day is just not worth the effort of having you both upset. If you are picking the things that are important and letting the things that are less important slide then you are doing all any car taker can do. My wife is in MC and there are still times that she doesn't want to take a shower and they don't pusher to hard, but the one thing they do is tell here it is time to take a shower instead of asking her if she wants to take a shower, and that works more often.
When my mom was a live and getting treatment my brother told me he wanted to be involved in decision about her. I told him that was good, but he couldn't be involved in decisions if he was going to sit at home and not be actively involved in her life.
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I think anyone who tries to guilt you with "You don't love him if . . . " is a toxic person to be avoided.
Sleep too much? My wife sleeps more than she is awake and is cranky as a tired baby if she doesn't get that much sleep. I think she is tired from trying to do a full brain's work with half a brain and needs the rest.
Daily showers? Old people don't need to shower as often as young people. I showered twice a day when I was 20, but my skin would dry up and blow away if I did that now. My wife hasn't showered in years, but she doesn't smell, because I give her sponge baths and rub oil on her dry skin.
Toothbrush? My wife still brushes twice a day, as she has done since she first had teeth, but she can't operate dental floss anymore. I floss them as best I can. Realistically, a person with AD isn't likely to live long enough to lose her teeth.
You are doing your best. Noone is perfect at this job, but we do our best. You don't suck as a caregiver; caregiving sucks.
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I read the book “The 36 Hour Day” and it helped me get my DH to shower 2 days a week. They don’t shower because they forget when they last showered, they forget how to shower and their skin is sensitive to heat & cold. So I told him our shower days were Wed & Sun. On those days I would get everything ready for him and at first turned on the water. I told him it was Wed and his shower was ready. It worked most of the time. Try having him brush his teeth while you brush yours to show him how. Then offer him a treat or maybe go for a ride if he likes that after he’s finished. He’s now like a toddler. And no you are not a bad caregiver. If anyone criticizes you, ask them to come care for him 24/7 for 2 weeks and I bet they shut up! They have no idea.
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@sbcspin
You don't suck as a caregiver. Your sisters suck as a sisters.
Caregiving in dementia is unlike any other kind. You have to balance priorities constantly. Safety is job one— bring in sitters meets that critical piece of caregiving. Hygiene is a resistant individual becomes a matter of choosing your battles for many of us. Sometimes the gentle strategies help a PWD submit to care, sometimes a professional can make it happen, sometimes a lick 'n' a promise with a warm wipe has to suffice and sometimes it doesn't happen.
If your "babysitting help" are your sisters, then I encourage you to invite them to help you with this.
HB8 -
If you suck as a caregiver, well then, you’ve joined a legion of us out here. We are all just doing the best we can, sharing tips that worked, others that don’t. In addition, what worked yesterday might not work today. We all sometimes feel like we should be doing better- but we are only human and all we can do is our best. We get tired, we have physical limitations, emotional limitations, we need time off, etc. There are times our best is better than other times. At least we are doing something. Whether we are 24/7 caregivers, advocating and caring for loved ones in a facility, or aiding family members caring for loved ones.
Do NOT allow the sisters to live rent-free in your head.
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I only feel like a failure on days that end in Y. My DH smells bad. He screams at me if I ask him to change his clothes. He sleeps in his clothes including shoes and socks. The socks haven't been changed in a month and I don't think he has showered or bathed in the last year. My daughter hangs out with him for a few hours every Tuesday so I can run some errands. I would be thrilled to give up my care giver duties. I am tired of the verbal abuse and the smells and yes I must S****ck at it too.
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If you are hanging in there, getting him to eat and take his med and are not abusive…you are a terriffic caretaker.
I am still early in the "game" but DH has already gotten argumenative about brushing his teeth (once). I didn't argue about it and I won't. If he starts sleeping longer and gets upset, I will let him sleep longer. When we get to the point of no bathing, I will buy the large wipes. It is hard enough to watch your loved one slowly erasing you and their kids and everything that made you fall in love with that person. I plan on letting him win all the skirmishes. If and when family members start the "blame game", I will gently insist that they come and be stay for a week and be the caretaker.
I don't know what I will do if/when he gets to a smelly stage. I am a super taster and super smeller. Grateful that I am also a super hearer. That will serve me well on this journey.
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No, you don’t suck as a caregiver if you’re doing the best you can. Lots of good suggestions here about showering and changing clothes. The only thing I would suggest is to do whatever you can to do some form of tooth brushing. I learned the hard way. My DH always took good care of his teeth before dementia. I was more focused on incontinence and showering issues and went for over a year without pushing the toothbrushing. Things went south very quickly and he now has several bad teeth and the anesthetics needed to put him out and pull them would likely affect his cognitive abilities and after care would be extremely difficult in stage 6/7. I use a strong fluoride mouthwash that I brush on his teeth at night with one of those little sponges on a stick and use a finger cover thing to do whatever brushing he will put up with. It won’t make things better but will hopefully help with not making them worse. His dentist says that there isn’t much if any pain, but I still give him Tylenol when I think something may hurt.
I hand feed him and have for over a year. He still eats well although it takes a couple hours sometimes.
Do whatever you can to push some type of toothbrushing. It’s amazing how quickly things can go south. Even a good fluoride mouthwash might help if you can keep him from swallowing it.2 -
No one here asked for this and no one knows what to do especially since each person with this disease has different issues . And guess what we do the best we can and No one has the right to criticize you! they are not walking your walk they should not judge. You are doing the best you can and that is good enough. They should be encouraging, hey maybe even physically helping you and not criticize! Shame on them! It’s a learning curve for us! My DH was showering once a month. I’m working on once a week. His teeth are and always have been horrible and he won’t go to dentist 10 years now! Picking my battles. Just know you are doing the best you can right now. Give yourself some credit. It’s a hard road . All the best
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I cannot imagine how I would react if my sister even insinuated something like that, let alone coming right out and saying it! How dare she…others are right, let her try and walk one day in your shoes. You (and all of us) have been dealt a crappy hand, and we’re all trying our best to keep our LO safe and as happy as can be. I can’t remember the last time my husband showered or brushed his teeth, but I did find a pretty lady barber who will occasionally wash his hair and give him a hot shave (I think he has a little crush on her 🙂), so I will continue to bring him for as long as he will tolerate it. You absolutely don’t s*ck, nobody needs this kind of extra angst, be strong and continue to do the right thing for both DH and you!
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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