Overwhelmed(4)

Mona3

I 'thought' I was handling this well. I realize I'm not at all.  I am so overwhelmed.  Answering the same question and being asked the same question within minutes and trying my best to answer it the same way as I did the first time.  Doing things around the house and agreeing when my DH says he did it.  Feeling so horrible for him and not showing it on the days he doesn't remember how to put a sandwich together when he was the one that cooked all our meals - he was a fantastic cook!  I too have health issues so my issues are only getting worse.  I need to be 'creative' in how I hire people to do things because he always says "I can do that".    He 'thinks' he is fine and that he still does everything and I want him to continue to think that.  I'm very lucky that he feels this way and I know it.  I am the one that needs help but I don't know how to go about it.  I've tried telling him 'wouldn't it be nice if we had someone here every once in a while'.  The response is 'what would they do'.  Then I think - what would they do.  He does sleep a lot.  I can't have someone live with us - if only!  I can't magically snap my fingers and just have someone for an hour here and an hour there not knowing ahead of time 'what hour' I will need them.  To cook a meal, to go food shopping, to do the laundry, to keep him occupied while I do the bills or arrange things that need to be done without interruption.  It is just SO OVERWHELMING! 

I'm sorry - I'm just venting.  I'm sure I will find a way - I always do.  I do feel better after venting to people I know understand.   I hope you are all having a mostly peaceful day! 

aod326

Hi Mona. I'm sorry you're having one of those overwhelming days/weeks/months. Being a dementia caregiver IS overwhelming, and sometimes we all need to let it out, to people who understand. 

It sounds like you're doing a wonderful job, having him be as active as possible and not pointing out the deficiencies.

I know that feeling of "I'll find a way; I always do.", but the constant need to find a way is so draining. One thing I've seen people here suggest before is to consider saying to your DH that you know someone who needs help (maybe they lost their job because of COVID) and you'd like to help them out by earning some money by coming for a few hours.  Any chance that might work with him?

Best of luck.

Crushed

We are all here for you we have all "been there and done that" in one way or another.  I have been on this road for 11 years. 

Come often and share

Rescue mom

Mona, I was struck by your question about what would a caregiver do in your circumstances. Sorry I don’t have an answer, but I wish I did and think we are in similar circumstances. Today especially, so I will vent along with you!

 My DH with Alzheimer’s sleeps most of the time. I have had caregivers here, mostly when I had to be out several hours (and for respite trips, which is different) , and they all left saying there was nothing for them to do, he did nothing, caused no problems, etc. (I have housekeepers who do good work).

Of course sometimes he DOES cause problems, and he absolutely cannot and does not respond to an unexpected problem—like broken water pipes, overflowing toilet....or constantly interrupt when I’m Bill paying, etc etc. But those things don’t always happen, nor on schedule.

There are many days when I need help with daily stuff, but it’s unpredictable and not scheduled either. An hour here, an hour there—but when? I talked to some fam who’s watched him, and they also said, “what would the aide do b/c he just sleeps.” Well, that’s true, until it’s not.

Any and everything that must be done, I’m the one who does it or arranges for it. Yes, there’s a lot of days when it’s overwhelming. I say I have to hire somebody. Then there’s a few better days....but those overwhelming days, especially if caregiver health involved, are just hard.

Mona3

What a wonderful idea.  I can have someone food shop under that pretense.  DH does it now (calling me constantly from store or bringing home wrong items).  I have vertigo and supermarket tends to cause a problem for me.

Mona3

Oh my, you sound like you are sailing in my boat unfortunately.   I have no family and we recently moved to another state.  As friends age they tend to move all over.  Hopefully a solution will find its way to both of us.

Rescue mom

A PS... my DH, in earlier stages, always responded better to outside help if I said the help was for ME, because I was sick or whatever (he wasn’t well enough to ask about me being sick, but he could at least understand it was for me, not him) He’d lost most empathy as well, he did not care about helping others, or helping a friend in need (a total change from before Alzheimer’s). But he did accept help for me.

Whyzit

Mona, I too was overwhelmed and the director of our condo noticed and said I needed a break. Fortunately, an aide for another resident was looking for 2 extra hours twice a week. So I hired her. DH is not buying into this but too bad. I told him it is to help both of us. 

The first time, DH left in anger before she arrived. So the aide and I sat and talked until he came back and she roped him in by asking about his carvings on display around our apt. I had her change the sheets on our bed. She did not charge me for this visit.

Tomorrow is the second visit. DH is doing physical therapy and needs to walk so I am hopeful they will walk together. We have light housekeeping done as part of our condo fee. I am going to have her clean my refrigerator. I can’t reach high enough to clean the microwave well enough so I will ask her to do that. She has also offered to do laundry. I hope she will also fill our pill containers for us (DH has 13 prescriptions) because I end up being woozie from doing it (vision problems). After a few visits I am going to leave and go enjoy a coffee with a friend.

I am going to make sure the aide has things to do—even if DH is sleeping. It is the only way we will survive this. 

towhee

Whyzit, a CNA or companion is not allowed to handle medications. Some pharmacies do provide a service where they will pre-pack your medications, for a fee of course. It might be worth it.

Paris20

Mona3, I so understand your post. Thinking I could handle everything myself, I wound up hospitalized. My daughters came up and brought a 24/7 caregiver with them. Family and friends had tried to convince me to get help but I stubbornly refused...until it made me ill.

The caregiver is excellent. She is a lovely woman, highly experienced in dealing with Alzheimer’s patients. The problem is my husband. He thinks he is fine. He is not. He rejects all help and becomes enraged when the aide offers to do anything for him. My husband thinks he still drives, still handles our finances, still can cook, shop, and fix anything. That used to be true but those abilities are all gone. I bought a mattress cover because he had several accidents. His urologist says he is fine, but that his condition creates the problem. My husband insists he never wet the bed. It took all I could muster to get him to wear pads. He changes them several times a day. He often has to change entire outfits because they are wet. It takes him over an hour to dress. A shower is now a two hour ordeal because he won’t accept help.

I am at the end of my rope. I’m terrified that the aide will quit because of my husband’s nastiness toward her. He curses, uses sexual innuendo, and has no more behavioral or verbal filters. He treats her as badly as he treats me. His neurologist prescribed Quetiapine (he’s already on Lexapro) but the first warning is the medication should not be given to dementia patients. I don’t know what to do. I’m not depressed, just overwhelmed.

David J

Paris20-

Quitiapine is the generic name for Seroquel. My DW has been on it since last fall, and many here on the forum have their LO on it. The Psychiatrist who manages DW’s meds gave me the warnings but said it would help. It did. 

ButterflyWings

Paris, 

Seroquel is one of the best things that ever happened to us. It is the only way I can keep my DH at home. When I realized he has a terminal disease (Alzheimers only goes one way...) it helped me think differently about meds with warnings. Saying this gently, I faced that my LO is dying so I decided to try making our lives as comfortable as possible. Quetiapine/Seroquel doesn't sedate him, but takes the edge off. He was exit seeking (all hours of the night, any kind of weather; hallucinating and weaponing up to take the non-existent burglars on; agitated, angry, and totally not his pre-AD self.) If think if he could reason properly, he'd be P.O'd at me if I withheld something that could possibly give him and me relief! 

Seriously though, I believe it clearly makes him feel better, (reflected in his more relaxed, reasonable behavior), it definitely keeps us both safer, keeps me saner, and there are no side effects that I have noticed despite increasing over time from 25mg at night, up to 75mg and even 100mg as needed, per his neuropsych (doses are spread throughout the day).

It seems like you've gotten used to the abusive language, but you're right, your wonderful caregiver/assistant may not want to be subjected to that over time. Here is what I was told recently by a long time alz spouse who never expected to place her husband, but had to or maybe not outlive him due to the stress and how it was affecting her health. She said: put yourself first. That's hard for many of us, but when I realize if I crash, this whole house of cards comes tumbling down...then I see it as actually putting my LO first also. 

Good luck to you and Mona, OP too! I am taking 15 minute respite self-care breaks today, to interrupt my overwhelmed feelings. (((hugs)) to all caregivers 

M1

Hi Mona.  A lot of the drugs called "atypical antipsychotics" carry that warning about risk of stroke/vascular events in elderly folks.  But as Butterfly and David have already said, they are very necessary for behavior managemetn in a lot of folks with dementia.  To put it in perspective for you, Seroquel/quetiapine is usually quite well tolerated.  Don't rule it out before you try it.

Ed1937

Paris20 wrote:

He curses, uses sexual innuendo, and has no more behavioral or verbal filters. He treats her as badly as he treats me. 

If the caregiver should quit, I wonder if you had a male caregiver....would things be different from him? Just a thought.