Help. How do you handle it?

mathreader · July 18

I really need some advice. My DH is aware of what is going on. He is not into ANY hobbies, unfortunately. He used to be a private pilot and we owned a plane, then we moved onto a boat for 8 years, in the far past he liked making model planes, but that is far past his capacity now. He really has no interest in doing anything now, but he wants me around all the time. I know that I need at least a day a week to do what I want to do, but I can't leave him for too long before he calls worried that I am in some kind of trouble. If he can't figure out how to call, he is in a panic when I get home. Getting someone to come stay with him would be great, but he would really object to a "babysitter" as he would see it, and he would never go, at this point, to day care. I'm sure I'm not the only one going through this. I just want to have a day to have a normal conversation without having to speak in circles, to go shopping, to have lunch with a friend or family member, to get a pedicure!! What do you do? I still think this middle stage dementia is the hardest.

tigersmom · July 18

@mathreader , I would not rule out daycare without trying it. It has been a lifeline for me for the last 18 months. DH has gotten harder for them to manage recently, and I think we may be nearing the end of it, but i will be sad to see it go. Don't call it daycare; we go the the senior center. To see his friends. Like your husband, mine is pretty attached to me, and it took an antidepressant to help manage his separation anxiety. But I keep trying because I honestly feel it is better for him. He is very bored at home, and they do all kinds of things there. He likes the pet therapy and the more active stuff (bowling, bean bag toss) the best. If your DH is a veteran, you might have more success with a VA program; they tend to have more men. I would encourage you to try it. It has really helped both of us.

Keetaa · July 18

This is how I am feeling. My husband (new to this site and I am unsure of what the initials stand for, like DH) has decided he does not like our children, who are my greatest support. He won’t go with me to visit, and doesn’t want them here. Every time I see them, or go anywhere without him, he is angry and pouts and complains. I am so tired of dealing with him. I feel hopeless about doing this for the rest of my life. And then feel guilty about being a terrible person.

LaneyG · July 18

Mathreader I am still struggling with the exact same thing. I really need a solution soon as I fear I am totally losing myself. Tigersmom I like the suggestion of calling the day care center a senior center. I might try that tho still not sure he will cooperate with being left there.

Jeanne C. · July 18

@mathreader My husband did suprisingly well in a day program until he progressed too far. It wasn't perfect, but it kept him safe and gave me time to work without interruption or get out to do errands and meet friends. We have a fulltime aide now. When first introducing the aide it was as "someone to help us out" and not someone to take care of him. It took a while to find someone who worked well with him. His aide is great with him and a huge help to us both. It was an adjustment at first, but now she's just one of his people.

@Keetaa welcome to the forum. Some commonly used abbreviations (like DH = dear husband) are at the bottom of the page. It sounds like you're at the beginning of the journey. We've been collecting useful information for new caregivers in a group. Go to the navigation (3 lines at the top of the page) and select groups. From there scroll for the New Caregivers group. Don't hesitate to post questions. I think you'll find the people on this forum to be kind and helpful.

harshedbuzz · July 18

@mathreader

You have my sympathies. The middle stages where dad had some awareness of his memory issues, but anosognosia around the degree to which his judgement and cognition were impaired just sucked for all of us.

Like your DH, dad's interests were beyond him by the middle stages. Socially he'd become isolated which meant leaning hard on mom. He'd been a 5-time-a-week golfer, but spatial reasoning and his unfiltered personality made him a pariah on the course. Living in a dream home that overlooked the 15th fairway kept him triggered constantly that this wasn't a part of his life. Friends and family dropped off as he was often offensive and insulting. By the time he was diagnosed, I was the only family member who actually visited them and they had one long term friend couple who saw them occasionally.

His other hobby had been reading— all kinds of history as well as his spy novels. He could decode written English and "read" it, but there was no comprehension as he couldn't hold onto the plot as it unfolded which frustrated him. This started initially with him complaining the books DH (also a voracious reader but more history, math, science, biography) sent him "weren't very good" (I'd read a number of them before passing them on and they were all excellent) or that new releases of favorite authors weren't as good as the their older works. He even reread things he'd loved and complained that they "weren't as good" as he remembered. He could not entertain himself and he refused to engage in any activity he deemed "housekeeping" or "crafts". He would sit on his sofa and call for my mom to "keep him company" which was beyond her as she's a high energy individual and was now tasked with running their lives.

Dad wasn't much of a TV person, but he did enjoy watching old golf tournaments on TV as well as football. He'd been really into cars and would sometimes become engaged with televised auto auctions for a bit. Is there something on boating or planes he might enjoy? You Tube, especially, has a lot of channels around— there's bound to be one on planes as well as boats.

This not only prevented him from accepting that he needed looking after, his lack of empathy and self-realization caused him to be angry that mom would wish to do anything but sit on her butt next to him listening to him tell the same unpleasant conflated tales on a continuous loop.

The ruse of a "senior center" wasn't possible for us in that dad was difficult to get out the door and he'd want mom to stay with him. Another quirk of his dementia was that while he was mostly oblivious to the degree of his own decline, both in terms of dementia and from being in his 80s (he mostly thought in was the mid-70s putting him in his 40s in his mind), he was very aware of dementia in others and could describe their symptoms with stunning accuracy.

He bristled at the notion of anyone in the house, but we used mom's TKR surgery to introduce aides to the house as ordered by her doctor. Others have had success with "hiring a cleaner" who gradually builds trust which can give you the break you need to be a good caregiver.

You need to figure out a way to get the respite you need and lose the guilt about it making him unhappy. Sometimes happy isn't possible and safe is the best we can get.

HB

CindyBum · July 18

I’m one that’s hired a cleaner. She’s great and does clean, which is a huge help too. It takes her 4 hours to clean and my DW is totally comfortable with her. Those 4 hours are such a relief. When my DW moves out of this middle stage, this young lady is ready to help with meals, drives and walks, etc. I’m sure I could also already put her on grocery shopping if I need it, but I love picking out what I want to cook still.

Gig Harbor · July 18

https://alzconnected.org/discussion/comment/216218#Comment_216218

Cindy I told my husband’s caregiver that she was free to take him grocery shopping if she wanted to do her own shopping. She would take him to Costco and wander around the store with him and then have a hotdog. He loved getting out with her.

rplourde50 · July 18

Brought on a guy to provide care support for my DW a couple of hours a week. She objected and there would always be a fight the day he came. She has finally gotten used to him and i come home to find them in animated conversations. Patience and persistence!

M5M · July 19

M5M · July 19

I have recently found a caregiver that DH really likes,—but since "he doesn't need any help"— we just go along with whatever makes him happy. He still doesn't want me to leave when she is here, but I think that will evolve over the long term. Having her started because I indeed had some health issues that I have made useful in explaining why the caregiver comes. And, as others have found, our long time house cleaner is an asset, and I expect she will be more so in the future.

SDianeL · July 19

the VA provided 4 hours of respite care per week. He didn’t like it at first but about the 3rd time he asked if “my lady” is coming today. If your husband can’t use a phone he should not be left alone. If an accident or fire happened he wouldn’t know what to do or he could wander off. Try your county senior day care. Tell him he’s going to help them.

White Crane · July 19

My DH is now in MC but when he was still home I contacted the Area Agency on Aging. They were a Godsend! They provided me with first 16 and later 32 hours a month of respite care. It took awhile to find the right aide but when we did, she was great and he liked her very much. At first he said he didn't need a babysitter but I told him she was from the Agency on Aging and they were visiting with older people. As time went on, they also sent a shower aide and she did a wonderful job of coxing him into the shower which relieved me of all the frustration of trying to keep him clean. All of this at no cost to us.

mathreader · July 19

https://alzconnected.org/discussion/comment/216317#Comment_216317

Wow - I will check into this. Thank you

Jazzma · July 19

i had similar issues when my husband was at home. He always wanted to know 'what's next?' and it made me crazy. He didn't accept the housekeeper we tried. I would take him to Costco or Wallmart and have him push the cart while I 'shopped' for an hour or so. None of those give you time alone.

I wonder if you could go to day care with him for a few days — say you want to visit a friend (there are undoubtedly people there who would love to talk and might not know that they don't know you). It's possible he could make friends with the staff or other residents and it would be more natural for him to spend some time there. You could go with him and after a bit excuse yourself to go to an appointment, maybe?

I agree the middle stage was rough. My husband is in memory care now and in many ways it makes my life easier — but there are different difficulties, including missing him so much and feeling guilty about placing him. I have a good counselor who urges me to repeat over and over 'I deserve to have a life' and 'I am not abandoning my husband.' It does seem to help.

Wishing you the best with a bad situation.

JDancer · July 19

https://alzconnected.org/discussion/comment/216181#Comment_216181

Jeanne mentioned the abbreviations are defined at the bottom of the page. They're on the upper right in my view. Hope you found them.

RetiredTeacher · July 19

I completely understand how you feel. I am in a similar boat with DH who doesn't initiate any activity. He would sit and watch TV all day every day. We go to lunch one day a week and go shopping and errands as outings. We also ride ebikes most mornings. I need to get out regularly by myself or I will lose myself in all this. I did get respite, only 4 hrs once a week. Sure wish it was more but I'll take what I can get. For those 4 hrs I am free again, I am young again and I am happy again! You must save yourself or you won't be able to care for DH. My hubby hates it....TOO BAD. I finally realized one if us is going to be unhappy and this time it's not going to be me! We give up so much of ourselves and our lives for the ones we care for, get respite so you can find some peace....even if it's only temporary. I pray for caregivers everywhere that we continue to find the strength.

Help. How do you handle it?

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