Activity, shadowing, and denial...

Hi LaneyG... I could have written your post to the last detail. My husband was diagnosed four years ago. He is in total denial or perhaps wants to cover up what he realizes is caused by the disease. It is gut-wrenching to watch a highly skilled and educated individual not know how to endorse a check. This disease is indiscriminate, it affects anyone no matter what education, skills, social class, etc. I don't always cope well although I exhaust myself to avoid discussions that don't lead anywhere. I have become a caretaker, money manager, home maintenance, chief cook, bottle washer and driver. He hasn't driven in three years. Shortly after he bought a new car his license was suspended at his doctor 's order. His car with under 2300 miles sits in the garage paying insurance, etc., because he won't sell it. He thinks he'll be able to drive it and gets very angry when I broach the subject. We have no meaningful dialog, he is forever changing from one week to the next. I have no words of wisdom. I've become a recluse, no friends, family far away, his three adult children feel really bad for his situation but don't have three minutes every so often to find how he's doing. I could go on forever but as caretakers we have all walked the same path and are on the same journey. Gather all the patience you can muster, get some audio books, earbuds, listen to music, go for walks, get out of the house even for an hour is like a vacation. I recently rescued a kitten from the animal shelter and that has been a blessing. He is entertained, for brief periods, he spends time with the kitten and "Oliver" is my ray of sunshine. He gets love and gives it back tenfold. Keep your sanity, join a support group (check this website). Even an hour of adult conversation every couple of weeks is worthwhile. May you find comfort in knowing that you are never alone but you need to reach out to others. You'll be amazed at how much understanding and support is out there. You and so many others dealing with the devastation of ALZ are always in my thoughts. I have many unaswered questions and have stopped trying to understand why this disease robs people of their uniqueness, personality, intelligence, and destroys the brain. Don't drive yourself nuts trying to figure it out. Be yourself as much as you can, don't try to "fix" it, there is no "fix" but do take care of your health and your own mind. I started an herb garden and take time outside and clear my head. Find your passion and your happy place. My best to you, I wish you patience. Hugs.

LaneyG, welcome to the forum. There’s a lot of info and practical advice on here.

i. Ant really address 1 or 2. A few comments on 3. First, folks with dementia as well as folks with certain other brain diseases having what is called anosognosia, not denial. With denial, the person could work with a therapist and deal with the denial. But people with dementia have brain changes that prevent them from understanding their changes and limitations. And what I’ve seen with my husband is that the anosognosia seems to fluctuate for him. And having a rational conversation with someone with dementia about their limitations is an exercise in futility and frustration.

About a year and a half ago, I started having a caregiver first twice a week and then reduced to once a week. I told DH that the person was here to do housecleaning to help me out. This sort of worked for awhile till he decided that he was going to leave when the person came. That was when I reduced to once a week. Then 6 mos ago, the caregiver had a medical issue and I decided not to replace her. I found that DH’s whining and dread led to my dreading it. He has recently progressed so that he doesn’t always recognize me so I think it might go better.

But people on the forum have come up with a few different stories to tell their PWD when they have a caregiver come in. One woman told her DH that the woman was in a training program and needed experience and he accepted that and the person came a couple of times a week to walk with her husband and they had lunch together. Another person had surgery and had someone come in to help after the surgery and the PWD accepted that even after the caregiver recovered since she believed it wasn’t for her. Fiblets are necessary.

you ask if you should force the issue and that is largely up to you. Several people on this forum have suggested that you start bringing in a caregiver early so that the PWD will be used to it. I think I might have tried it too early. I’d say DH was late Stage 4 when I started. And for me, I don’t think it was worth it. But he’s now mid to late stage 5 and I think it might work. I’ll use the housekeeper fiblet again. As much as he’s progressed, he is still aware enough that he would not want a babysitter either.

It does sound like you need some respite so it might be worth trying. But think of a cover story. Maybe you could find a caregiver that plays the guitar that would come and spend a few hours with him. You never know. Good luck!

Guitar lessons 😉 Great idea.

Anosognosia is real. Definitely not denial. It is a real lack of insight that there are any deficits due to the brain damage. For us, that made it easier in some ways (DH is not depressed or despondent about dying of the same cruel thing he watched his parent succumb to) but way harder in others, at least early on (stopping the driving, exiting his career against his will, roaming everywhere by himself etc., etc.)

It was a real challenge for me to keep up with him and prevent more catastrophes once I realized something was "off" with my LO. Fiblets or "don't ask, don't tell" became a fine art at our place. This forum is excellent to get through the various adventures of dementia life.

It was late 5, or at least early Stage 6 before we started with regular caregivers. It wouldn't have worked before then due to his activity level and elopement instinct. Just too much for most people and the stress and worry was not worth it to me. When an aide is there now, I always introduce them as someone who stops by sometimes to visit us, or to help us, or whatever words I happen upon to try and keep it low key while I putter around without leaving immediately (unless they're late arriving and now I'm rushing off to work...hate that but it happens).

The first several times a caregiver was there, it was 1 hour of the hospice CNA who gave me that short respite since DH did not need any physical care and I used a ruse...stepped out to "take out the garbage, be right back", a few times (for a 30 minute-to-1 hour errand). This worked because he already was not oriented to time or how quickly it might be passing. But once or twice he was peeved and pouting when I returned and I gave him a treat or extra attention without saying it was because I left.

He can be skeptical still, but by now he pretty much accepts me not always being in his sight, and having someone else sitting nearby reading or whatever. He doesn't always know who any of us are. Will accept food and magazines, etc. from anyone but is pretty non-verbal so they can't converse, unfortunately. DH would have enjoyed that. Basically, he's really unhappy with strangers touching him or trying to pull his pants down, etc. Understandable instinct but it makes it tough since he is doubly incontinent. I'm on a short term work assignment currently, so I check in every 3 hours ish if working all day, to toilet, clean and change him and for now that's fine. Companion care is really what we need, anyway, as he just can't be alone and so they can alert me if/when anything happens (and prevent obvious issues like eating or drinking non-food, leaving water running, rummaging, falling down, or leaving the house).

So, I say try it. You will find a rhythm and what works best for you all. Be prepared to audition a few aides before you find the best fit. And hopefully you will be able to keep them as there is lots of turnover in the industry. Or maybe you will hit the jackpot!

It's very hard to hold onto the fact that we must do things to refresh our strength and our will to carry on with all the tasks involved in dealing with a loved one's dementia. My husband, at Stage 6.5 Alzheimer's, had begun to show signs of agitation and anger, and his Home Hospice nurse immediately put him on Seroquel to help calm him. Worked like a charm! He is alert, positive and calm now. I stopped asking his approval of decisions a while ago because his ideas were counter to what was best for us financially, etc. He had a beautiful truck in our driveway for years and didn't want to get rid of it. I made the decision to sell it, told him I was going ahead with the sale because it was best for us and he, surprisingly, was able to see the logic of it. In a way I think he appreciates the relief from having to make decisions. We are all on an incredibly hard road here and maybe it's best to take it in small increments, day by day. Blessings to you and your husband.

Thank you so much for sharing. I feel less alone knowing that other people are dealing with the same issues.
My sweet husband has lost almost all language. He rearranges things incessantly, sometimes as I am using them. So I just try to keep up and put things back where I can find them again. I think that he forgets where things are unless he can see them, so he spreads them out. He used to be so tidy, like me. No longer. I hide some things, like coat and gloves and outdoor shoes so I can find them when we need them.
He has always been useful, taking care of things around the house, but he just cannot now. When I clean, or repair or cook, he stands behind me murmuring 'I can do it.' I struggle not to get angry when I step back and bump into him when I am carrying something in the kitchen, or when he follows me, and then stops, blocking the stairs or hall. There are a few things he can still do, like sort silverware, fold laundry and make a bed if I am there to help.
Finding the toilet during the night, is a challenge for him. So I sleep with one eye open and jump up to help him as soon as he gets up. It's tiring. Now sometimes he forgets where it is during the day too, and wanders around opening doors.
The worst is missing our conversations. But we still can dance, play pingpong, vacuum, shop, and take walks.

I pretty much have the same issue with my DW. She used to be extroverted and she still is to a point with strangers. But she has multiple hallucinations, she constantly accuses me of having a girlfriend (which I reply could you introduce me), she has started to fall a lot, and amongst other things she seems like she can't see what she wants to pick up. I just had her to the Optometrist and he ordered her a new set of glasses. But, it's like she doesn't know what she is supposed to pick up.

Vince, PWDs have agnosia, they no longer recognize things, even if it's right in front of them. This is a huge safety issue. They can pick up bleach and think it's a beverage. They can't tell by the taste, either. You will have to dementia-proof your home and remove all dangerous objects and chemicals.

Iris

Reading these posts are helpful, but depressing. DH was just diagnosed with alzheimer's a about a month ago. We have no children, close family or mutual friends so it is just me for him. In some instances he still acts almost normal…can still drive (if I'm with him), check the oil in the cars, water the plants, dress and shower, etc. He can't operate tv remotes, cellphones, pay online bills or understand anything financial and doesn't want me out of his sight. I am an artist, but will soon have to give that up unless I can paint in the middle of the night…too exhausted for that now. I am in the stages of trying to figure out how to protect some of my assets in case he needs medicaid nursing home care and wondering how in the world I will put my house in order so that it is safe for him. I have everything to learn about being a caregiver and am basically terrified at the moment. Thanks for listening to my rant…I feel better already!

hi MB Wendy and welcome to the forum, you have come to a good place for advice and support.

I have to say however, someone who cannot operate a remote or a cell phone should not be driving. This is a huge hot button issue for most families. But other people’s lives are at stake. If he were in an accident and had to testify or give a deposition, could he do it? You could be sued for everything you own.

If you don’t yet have legal matters addressed and are concerned about protecting assets, you should talk to a certified elder law attorney asap. You can find lists by location at nelf.org.

Look to the right under Quick Links and Groups, and there is one for new members with a lot of useful information.

MB welcome to the forum it has been very helpful, comforting and yes, sometimes terrifying. I would just like to chime in here on driving. I agree with what someone else posted about driving. I thought my DH was okay driving too short distances around town earlier in his disease. However he ran into a parked car less than a mile from our house with a cop behind him and got a reckless driving ticket and we had to go to court. Thank goodness no one was injured. It was really a blessing the judge agreed to drop the charges is he surrendered his license. It was extremely difficult and he still blamed me but after a while it became a thing of the past just like everything on this journey. Also something that has been a true blessing for us was getting involved physically in church. We were just watching sermons on TV because I thought church every Sunday would be a pain. Nothing was further from the truth. My DH loves going and thinks every day is church day. We made such caring friends. Who come and visit/sit with him while I go to work 2 or 3 days a week. In stage 6c I don’t know where we would be without our faith and church family. The disease progression is definitely soul sucking in so many ways but you may find advantages in later stages if you look for them. Good luck.

Thks for your helpful comments, Tryingtodurvive. We are just in the beginning stages of this journey…DH is still in denial. He is intent on moving…to a house near his brother, living on a big sailboat, traveling the country on an RV…each day is a different idea. I know the driving issue will have to be addressed soon and I dread it as he will be belligerent and it will be a huge fight, I know. We have never gone to church, so starting now would be a big step, but one I am considering for the future…glad it is giving you some relief. I am retired so can, and am, with hime 24/7…not much of a life for sure, but one everyone here can relate to.

Hello,

Welcome and many answered your questions. I had much the same in the early stages with my DW. She's shifted some and become slightly more social with her own family, but that's it.

1. I bought a landline and a device that connects the landline to my DW's cell phone. It's called a Cell2Jack that I got on amazon. Works great. I told her it would work better and we wouldn't lose our phones so much (I include myself in having some of these issues too as often as I can. It seems to soften some of these changes for her). She now can get calls from family and friends, because she couldn't operate her cell phone at all. She gave up on her computer, so I know how lucky I am on that. I'd been playing tech support for both for years and not having to do that anymore is a huge relief.
2. and 3. These are harder, but I got kind of lucky. I found someone to clean our house who has also done elder care in the past. She comes once a week to clean, even though I really don't need that. It's worth the money because I take off while she cleans and go run errands. I set my DW up with her favorite tv show and she finally accepted this person cleaning. When I need more care, I've already arranged it from this woman and my DW trusts her now. I know that's a unique situation, but introducing someone into the home without it being —she's here to care for you— made it pretty easy on me.

My DW also wants me to go to bed at 8:30pm when she gets tired. I'm typically not ready to go to bed that early and haven't fully cracked that nut of how to get out of it. I can often go with her, give her a nighttime meds, put on a tv show and she falls asleep and I sneak out. Doesn't always work, but like you, I can't take the guilt trip after a while and just vie in.

I say these things recognizing that my DW hasn't had anosognosia and she's been ok giving up things like driving and the computer. Cell phone was a little harder, but she's really happy having what appears to be a landline.

Good luck!

Please consult an elder attorney to get your affairs in order. They are worth it. I spent $1200 for the paperwork and consult along with a plan. It gave me some peace of mind.

> @LaneyG said:
> Hi!
> My husband is in moderate stage dementia. We don't have children and nor do we have a large network of friends or family who are able or willing to help much. Once very social he is now shying away from people probably due to word finding challenges. I know I am early on in my caregiving journey and these problems may be minor compared to what's to come. But anyway, I'm still hoping for some advice/suggestions on how to deal.
> 1. I am bombarded constantly with questions related to computers and cell phones. He can no longer use but continues to try. Our expense related to guitar stringing is skyrocketing because he always thinks he needs new ones and is constantly breaking them. He no longer plays more than a minute at a time. He says he doesn't remember how to play chords. I can tell he is in search of some normalcy or something he can still do. We used to read together, watch movies, tackle a chore but his attention span is no longer there. How can I occupy him with a new interest? Is this even possible? Can he relearn guitar with help?
> 2. He shadows me, and won't let me out of his sight. I can't leave the room without his getting upset. I know he is scared. He says he wants to protect me from harm. If I am working a task, he sits and watches me. He has taken to going to bed right after dinner and he insists I go with him. He guilts me if I don't. It used to be the only time I could get anything done. Any suggestions?
> 3. He will not agree to having someone coming into the house to hang with him while I run errands or take a break. He says nothing is wrong with him and he doesn't need a "babysitter". He denies he has memory problems even though the evidence is so obvious. He won't let me go anywhere by myself. I've learned and read enough to know that I am going to need to find a way to catch a couple of hours a week for my own mental health or even an hour a day. I'm not seeing how I'm going to be able to make this happen. I want to find a resource that he can gradually get to know and get used to, but he won't agree. Should I be forcing the issue at this point?
> Sorry for the rambling/venting. Any input is appreciated.

> @LaneyG said:
> Hi!
> My husband is in moderate stage dementia. We don't have children and nor do we have a large network of friends or family who are able or willing to help much. Once very social he is now shying away from people probably due to word finding challenges. I know I am early on in my caregiving journey and these problems may be minor compared to what's to come. But anyway, I'm still hoping for some advice/suggestions on how to deal.
> 1. I am bombarded constantly with questions related to computers and cell phones. He can no longer use but continues to try. Our expense related to guitar stringing is skyrocketing because he always thinks he needs new ones and is constantly breaking them. He no longer plays more than a minute at a time. He says he doesn't remember how to play chords. I can tell he is in search of some normalcy or something he can still do. We used to read together, watch movies, tackle a chore but his attention span is no longer there. How can I occupy him with a new interest? Is this even possible? Can he relearn guitar with help?
> 2. He shadows me, and won't let me out of his sight. I can't leave the room without his getting upset. I know he is scared. He says he wants to protect me from harm. If I am working a task, he sits and watches me. He has taken to going to bed right after dinner and he insists I go with him. He guilts me if I don't. It used to be the only time I could get anything done. Any suggestions?
> 3. He will not agree to having someone coming into the house to hang with him while I run errands or take a break. He says nothing is wrong with him and he doesn't need a "babysitter". He denies he has memory problems even though the evidence is so obvious. He won't let me go anywhere by myself. I've learned and read enough to know that I am going to need to find a way to catch a couple of hours a week for my own mental health or even an hour a day. I'm not seeing how I'm going to be able to make this happen. I want to find a resource that he can gradually get to know and get used to, but he won't agree. Should I be forcing the issue at this point?
> Sorry for the rambling/venting. Any input is appreciated.