AARP Online Community and Discussion Forums - Caregiving

I455JAP · ‎03-23-2017

Hello-- I'm new to all this but I saw an commercial on TV today regading caregiving.

I currently take care of my mother's friend (my mom passed away several years ago). He has been more than family to my mother, sister(who also passed away) & me for over 50 years. He has a heart condition & a bit of dementia; I basically do everything for him, but at times I feel like it's not enough. He's not a very good patient, I try to hold everything in--then I feel awful if I lose my temper with him. I owe him so much for all the years he's been part of our family & helped us when noone else would be there for us. I did retire in 2015.

JaneCares · ‎03-29-2017

@I455JAP wrote:
Hello-- I'm new to all this but I saw an commercial on TV today regading caregiving.
I currently take care of my mother's friend (my mom passed away several years ago). He has been more than family to my mother, sister(who also passed away) & me for over 50 years. He has a heart condition & a bit of dementia; I basically do everything for him, but at times I feel like it's not enough. He's not a very good patient, I try to hold everything in--then I feel awful if I lose my temper with him. I owe him so much for all the years he's been part of our family & helped us when noone else would be there for us. I did retire in 2015.

Hi there,

You've received excellent advice and support. I have just a couple of thoughts. One is, since he is no blood or legal kin to you, did he name you to be guardian, that is, to have power of attorney for health care, and for finances? If not, did he name anyone else? is that a topic you want to broach? Could be tricky. But if he continues his decline which he is bound to, you will eventually have a crisis and then someone will have to make some decisions. And as he becomes a heavier care patient, you may need to access his money to pay for aides, or to qualify for medicaid, which pays for aides in the home as well as nursing home care.

Secondly, as lovely as he has been to your family, you are not obligated to give up your life. Or take any **bleep** from him, dementia or now. You can train him to treat you with respect. As he loses power as a person who is disabled, and a bit confused, he's "losing face", getting embarassed. Plus, he's a dude. So, he's gonna be cranky, embarrassed, angry. And deep down, we're all toddlers: no one wants to be told what to do. So be firm, be yourself, know your limits.

Be good to yourself, too. Okay? You retired: keep up interests, friendships. You are not his servant.

Write back. Please.

I455JAP · ‎03-30-2017

Thanks for responding. I do have power of attorney - we discussed this last year & he felt it would be for the best. He has always been 'a spoiled little boy) & I do onderstand how hard it is to accept what's happening to him. I live alone ( no famly left & all of my work friends have gone their own ways -he has no family or friends left)). I handle EVERYTHING by myself. Each day I say that I'll start back at the gym (I would go very early, while he is still asleep); but it seems like each tme, he has terrible nigtmares or not feeling well & then I forget about this. He is a wonderful man , I have so much to be thankful for, but he is not a very good patient (gets very angry & confused) I can't locate any caregiving support groups in my area

JaneCares · ‎04-01-2017

@I455JAP wrote:
Thanks for responding. I do have power of attorney - we discussed this last year & he felt it would be for the best. He has always been 'a spoiled little boy) & I do onderstand how hard it is to accept what's happening to him. I live alone ( no famly left & all of my work friends have gone their own ways -he has no family or friends left)). I handle EVERYTHING by myself. Each day I say that I'll start back at the gym (I would go very early, while he is still asleep); but it seems like each tme, he has terrible nigtmares or not feeling well & then I forget about this. He is a wonderful man , I have so much to be thankful for, but he is not a very good patient (gets very angry & confused) I can't locate any caregiving support groups in my area

You are a very generous person, that much is crystal clear. Perhaps this chapter in both your lives have precious lessons imbedded in them: for him, and for all aging people who are coping with multiple physical and psychological losses, and for you, as a retired person, as a caregiver, as a person trying to figure out your own path. His lesson, his opportunity, is to grow up just a little bit more, and try being grateful for what he has, for what remains, for what pleasures there are in his life RIGHT NOW, even with all the indignities. To focus on what is good and right and lucky and blessed. Sounds like a stretch for a spoiled boy living in a decrepit body, but the rewards are great. If he can see them, the potential of them.

For YOU: as you know, because you've written to this community, you are more than his caregiver, you have limits, which is why you are so smart to walk away from his childishness and negativity sometimes, you have a world and an inner life and desires and talents and perhaps a very long bucket list. So, this is an opportunity. What do you want to do now? Who are you now that you are not a working person? Have you always wanted to learn to knit, ride a motorcycle, bake the perfect pie, learn to cross country sky, sing in a choir, grow heirloom tomatoes, go to Alaska on a cruise?? I dunno, I'm brainstorming here. Who are you? Who are you, next? What does your next chapter look like?

Meanwhile, clothing needs washed, bills need paid, your beloved old fart is fussing about something....

So glad you wrote back, please keep writing. This is a conversation. Life is so complicated. And teasing out the different strands of it is way more fun to do with other folks.

thank you so much for your candor and story. I await a post about your dreams and goals and hopes... if you want to share them... and on how you find the discipline and presence of mind to walk aways sometimes.... that is so smart...

all the best

jane

agoyer · ‎03-29-2017

@I455JAP It sounds like you are doing your best and it's so wonderful you are there for this man - sounds like he has been an important person in your life. I am caregiving for my Dad who is 93 and has dementia (Alzheimer's is the type of dementia he has) and lives with me. So I understand how you are feeling! A few thoughts I hope will be helpful!

Has he been officially diagnosed with dementia? And if so, what type? If not, I urge you to help him get a thorough evaluation and diagnosis. There are other things that can cause dementia symptoms (nutrition, medication side effects, thyroid imbalance etc.) that can actually be treated/changed and might help a lot. If he does have dementia, it's important to know what type and ensure he's receiving any treatements that might help the symptoms.
Some of the things you mention can be dementia-related - such as the mood changes and anxiety and difficulty understanding and communicating, judgement changes. Dementia affects memory but also all of these other cognitive functions and more. These things can then affect his relationship with you and make him seem more demanding. He may be experiencing fear and anxiety often comes with dementia, so treating the anxiety can be very helpful and make care
It's helpful to figure out what he's really feeling. Most of the time when my Dad gets angry and yells at us or refuses to get up out of his chair and that sort of thing it's because he doesn't understand what's happening, he's afraid, he's sad because of all of this etc. Once I reassure him, ask him if he's feeling angry, afraid, confused, etc. he calms down and is so happy to receive love and reassurance.
If dementia is involved, it becomes a better strategy to validate and "join" their reality than to try to convince him of the "truth" or correct him. It just makes things harder for him and therefore for you.

I'm glad you found our online community - are you getting any other support yourself? You might contact the local area agency on aging and ask if they have a list of local support groups for caregivers. You can find yours at www.eldercare.gov - put in your zip code and the list of area agency on aging and other services will appear.

I know how hard it is to do this - it's emotional and distressing especailly when personality changes happen (my Dad was the happiest most optimistic person you'd ever meet - now Alzheimer's has changed that...). Please let me know if I can be of any further help!

Take care,

Amy Goyer, AARP Caregiving Expert

I455JAP · ‎03-30-2017

Thank you for respondig to me. His cardiologist stated that he had the signs of dementia- his primary doctor could not agree with this (at the time); Now, his primary doctor is starting to see some signs. ( I will discuss this further with the doctor next week) He sees this doctor every month since he also diagnosed with Afib. He was always very active (before reirement he was a mail;man--which included a great deal of walking. Now it's a struggle fo him to get out of bed.

I don't have any support (my family is gone & since I retired, no friends). I will check out the webite you suggested. I try so hard to be patient with him, but sometimes it's really difficult (i walk away when he gets to be 'too much"

ws68934964 · ‎03-26-2017

I know exactly what you mean as I to have been and still am in such a position with a loved one, family member, who can drive you up the wall.

I guess the feeling is that sometimes you need to close your eyes to their behavior and just pretend you didn't see what they do. Sometmes the elders think they are pulling something over on you which makes them feel good. Often times they treat things as a game because their mind sometimes loses cognitive skills but still holds on to the childish game playing. Just make a mental note of what they are getting away with.

I guess the best way to help understand things is through example. My 90+ year old mom developed high blood pressure and some problem with glutten. Of course, the doctors don't know what they're talking about, she says. Well 185 over 90 is nothing to ignore. I tried to discuss this with her but that was like talking to a brick wall. So what I did was just changed the diet without telling her I was going to do it. Made a nice chicken dish with some rice and veg. I continued in this fashion making other goodies as I described them, so that after a month or so I got the blood pressure down to 130 over 50. The doctor was surprised this was done with a change of diet only and not meds.

The point to this is its better not to argue with these elders cause you'll probably never win the argument, but just smile and try to redirect to something they think is positive. Usually they'll forget about the argument in a very short time anyway.

I455JAP · ‎03-27-2017

Thank you for understanding. It sounds like you reaaly know what I'm talking about.

I did already change his meals plus give hime a Boost shake -- he is good with his meals. I've tried to ignore the 'games', etc., but I feel like I'm losing myself ( I've always been an extemely patient person --he does put this to the test as often as possible.) If I say I'm going to the gym or for a walk, it seems like this is when it's the worst. I haven't gone to the gym in several weeks & IF I do go for a walk, I reduce the time I'm away. I'm trying to dal with this s best I could.