How to deal with anosognosia? My husband thinks he’s fine.

If you're feeling caregiver "burnout", that means that you are not doing enough to take care of yourself. That is the most important thing we, as caregivers must do, but is often neglected or ignored. If you have to hire some outside help to stay with your husband, while you go to lunch or supper with some friends, then do it. You can also just go for a walk in your neighborhood, go shopping, or just sit outside on your patio or porch(weather permitting). These simple things can make a huge difference in how we continue on our caregiving journey.

And yes, there are home health care agencies that are supplying workers despite Covid, so you can just tell your husband that they are there to help you, so you can get some much needed breaks. Wishing you the best.

You can't fight city hall and you can't fight anosognosia. Your husband isn't in denial of his disease, he actually believes he's fine. No convincing or rationalizing will change his mind. Accept the fact that he feels fine.

If you've taken the burnout quiz, you know what your level is. Whether you scored low or high, it must be addressed. Burnout can begin with being simply annoyed by your LO's behavior. That can escalate to frustration, anger and finally resentment. You need some respite time where you can have break. Call your local Area Agency on Aging, they can offer help.

Caregiver Burnout is real and awful---I have had it more than once...as DH, his dad, my dad, his mom and my mom have all had great CG needs that seemed to fall either partially or totally on me....one right after another.

I was always OK during the 'crisis' part of most situations, falling to pieces only AFTER everything was 'settled' or 'over'....but I have completely lost that ability in the last year or so, as I went through a cancer battle. I may never have the strength or ability to caregive the way I used to--and since I always felt like that was kind of part of my DNA--it's hard to admit I just CAN'T do what I used to.

2020 has been a learning year, and one thing I learned was to put myself first. If that meant a nap everyday, then I nap. If it means I sleep in a different bedroom b/c DH needs to have the TV on all night so he can sleep...then I leave.

I have now developed heart issues--tachycardia due to stress and sometimes my heart will race for 2-3 hours as I struggle to calm down and get 'over it'.

Luckily, my grands are all past the baby stage, my mother and MIL are probably never going to go back to life as it was prior to covid--my MIL especially has not left her house in almost a year---mother may go back to the Sr Center, but it won't open for months yet.

I was never taught to self-care. It's an important part of my life now. I got the all clear from cancer and COVID hit. Dh was home all the time--glad to kick 2020 to the curb!

However you relax and care for yourself is your choice. I still want to do service type things--but nothing long term and nothing that saps my soul.

Accepting that I don't wake up 'happy', ever, I take mornings slow. I'm spending more time doing things I want to do, after 45 years of doing what I was EXPECTED to do.

I have learned, the hard way, the difference between service and servitude.

Good Luck! We're useless to our families/friends/neighbors if we are stressed and grouchy!

Getting back to your caregiver burnout...get help fast whether or not your husband wants it. At this point, he don’t care if you drop dead before him. Don’t depend on family or “friends.” They won’t show up. He will need a facility very soon. He’ll start falling frequently. He’ll leave stove on & go to sleep...

Don’t wait until there’s an accident & don’t use Covid as an excuse. Don’t go at it alone. Hugs 🤗

I wish you find some relief and assistance. I have the home health agency and rehabilitation coming in alternative days . So home health agency are available to provide assistance as well as OT and PT.
if it would help you , you could consider a cleaning service which a home health aid will assist with some household cleaning and cooking chores .

I am exactly in the same situation. My husband didn/t qualify for Hospice since he is not incontinent but we are getting home health with consists of a nurse coming for about a half hour once a week and a Physical Therapist once a week. He has done ok with these two but when an aide came to assist him with a shower that was WAR!! He refuses to take a shower but I started to move my clothes into another bedroom and told him I would not sleep with him unless he took a shower.
That did it, thank the Lord. I hope it keeps working at lest once a week. He has two daughters, one lives about 48 min. from us and the other 15 min. They are so busy that I have not been able to get them to come, especially to give me a break. I can't do anything without him, can't leave him alone so I feel like a prisoner at times. The only thing that keeps my sanity is my relationship with Jesus, my Lord and Savior. I try to watch Christian TV as much as possible but he is wanting the TV off so we can talk. That means constant repitition. I pray for strength, wisdom and the ability to keep on. He is 82 and I am 84 with type 2 diabetes and neuropathy. My legs get quite weak at times but thank God I am able to continue. I pray Jesus comes soon to take us home.

I share your frustration. Example: A close friend with Alzheimer’s had to move and have care . My mother (95) can discuss with me (with seemingly great lucidity) how sad it is to see him repeatedly hide things then think they’ve been stolen, how he’s no longer able to make (carpentry) and repair things, et cetera, but, for her it’s different. She swears she is not hiding her things, they really are being stolen, then, when she’s wise to the thieves, they know it, so they break back in and return her things to different locations in her home. I watch as she hides pieces of her sets of bedding to trick them. A week later she’s storming about, eager to show me the linens drawer with its lone pillow case - definitive proof of theft. I retrieve the other case and sheets from their hiding spots, she fumes and trots out the story again. When I gently suggested her brain may be lying to her like our friend’s, she doubles down that he really has Alzheimer’s but she’s fine and the rest of us had better stop gaslighting her. This has been going on for 2 years. I freely admit to her how I forget and misplace things all the time and that’s ok. Frustrating and even embarrassing, but ok. NO, that is not happening to her. Everyone is mistaken, even lying, about her.

Sorry - I needed to vent.

I agree with Studebaker. Start looking for a reputable agency or homecare to come in (or both, as they have!). When introducing a caregiver into the situation, have them come to help you. Don’t force your husband to interact with them. Instead, let them help you with tasks around the house. They can interact more as he grows comfortable with them and finds them useful to him. For example, he might like them getting him a cup of tea instead of you, responding to his questions, and basically giving him attention while you take a relaxing outing or whatever you’d like. He might really like the attention.

Looking ahead, it might be time to inquire into a better long term solution since hiring caregivers can get expensive and Alzheimer’s gets progressively harder.

Sending you hugs. My husband passed away 10 days ago. Try to balance your life. Good luck.

Your husband has 2 "coping strategies" that creating burn-out for you. Confabulation is "lying," the brain inserts other information to fill in the blanks to cover his memory losses. It is sad that you know what he he forgets and realize his inadequate attempts to be humorous or make sense or "fill in the blank" whenever he talks. This will change and he will probably continue to lose more memories and may even lose the ability to talk altogether. The last one is the brain fixating on a thought process which results in asking the same question over and over and over.... of saying the same thing over and over and over. The best way to stop it is to give the brain something else to focus on: a task or a new topic of conversation, redirection.

As others have mentioned, it seems you need help in caring for your husband. Contact family, friends, members of faith community and home health care agencies to give you some time off daily and longer times weekly. You need to be able to meet your needs: sleep, meals, hygiene, health care, and social interactions/ hobbies... which means some time off from caregiving duties.

My situation is exactly like yours. No family nearby and hubby can’t be left alone. I just hired an aide to come for 4 hours once a week which is so therapeutic for me. He’s not thrilled about having a “babysitter” so I try to explain she’s here to do other things and for my peace of mind. She wears a mask and gets tested by the agency. Try to get some respite. It makes a world of difference.

I don’t want to sound harsh but
you’re on your own!!!
Nobody is going to help unless they get paid. And you’re right when you say ‘nobody has to tell me he’s getting worse’. Neurologists are ‘diagnose and adios’
you need to decide how much help you want ... I think you could get about 6 to 12 hrs/ week free thru gov’t agencies... so apply for that ASAP .. then look into hiring privately... one thing’s for sure .. he’s not getting better . And neither will you. You need to be well to take care of him.
good luck !!!

I can empathize. Years ago, I was in a store, and I saw a middle-aged woman talking to an older woman, I assumed her mom, and the younger woman said, in an exasperated tone, "We just bought eggs, now we're buying milk!" I thought, if it were me, I'd never talk to my mom that way. Well, fast forward about 10 years later, and my mom gets Alzheimer's. We had just past the grocery aisle with tuna, and she asked if I needed any, and I said no. Five minutes later we were back in that aisle for something else, and she said, "Do you need tuna?" And I said, "No. Didn't we just have this discussion?' And she said, "You didn't talk to me about it." "Let (s)he who is without sin, cast the first tuna (into the sea.)" I even wrote about our travails taking care of my mom called, "My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale." My mom, too, didn't think there was anything wrong with her memory. Best of luck.

Covid has not really prevented in home health care. Those folks have continued to see my parent, they wear masks/gloves, check temps, ask questions about exposure, etc. You need help and you need to ask the dr to order home health care to hep you out. As for family, reach out to them even though they don't live close. It is possible someone could avoid contact with others for a period of time and come to stay with you for a while. It doesn't hurt to ask.

I'm sure you didn't have to take a quiz to determine you are burning out, exhausted, and in need of help. Your body already told you that pre-quiz. Ask for help. Laundry, cleaning, meals, assisting your husband a little. Anything.

Put yourself in his shoes for one day, you might be just like him.

Just show him love.

Try to have more patience, who cares if he doesn't remember the kids and Grands Birthdays.

Many men with alzheimers don't.

Remember telling your children over and over again the same things in answer to their questions.

TRyan hiring a Caregiver so many hrs a day or whatever you need.

Your husband isn't doing these things to bother you,, he can't help it..

Pray for more understanding and Love and when you look at things differently, you'll both be.

There really isn't any way to "deal" with it. In the early stages, it was the repetition that clued me in about my mother. Living with someone, it probably becomes apparent much sooner, but she lived alone. During the whole time helping her in her own place and then in MC, I never ever mentioned the "D" word. To her it meant you were "off your rocker", aka crazy. It doesn't mean that, but that's how she viewed it. In trying to discuss some options, mentioning that she forgets things, she had her own ready response: "She's old and entitled to forget sometimes." Problem was it wasn't sometimes! She also would repeat the same statements or questions multiple times within a minute. She also had a mantra: "I'm fine, I'm independent and I can cook." She would repeat this to anyone who thought otherwise, but I knew none of it was true!

Part of the problem is that as their short term memories fade away, the longer term ones are there to "fill in", so to speak. Their "new" view of themselves is that prior person from 5, 10, 15 or more years ago. Nine months after mom moved to MC, her focus switched from her last residence to the prior one, which was sold 25+ years before. She also became fixated on calling or going to see her mother, who had been gone about 40 years by then. Last year she asked about a younger sister, and her statements pegged her still in that 40 years ago life.

One thing the staff will tell family members is to be in their "moment". Don't try to correct or argue with anything they say or do (unless it involves safety!) Go with the flow, try to change subject or focus onto something else. The repetition does get old quick, and I wasn't living with it every day, so my sympathies. I did start using different answers each time she asked. She never noticed. Perhaps you can try answering and then quickly suggest a cup of tea, a snack, a quick walk around the block or something to get him out of that rut he's in. I liken it to a scratched record, which keeps repeating until you can nudge it along... works great until it hits the next scratch!

Like others have suggested, see if you can hire some help. Initially you may have to just "be there" when they are there, but distance yourself more and more, as he hopefully gets used to the person being there and then start leaving for a few minutes, longer each time, so you can do errands and get some breaks! If nothing else, you'd have a more competent person to "chat" with while you ease yourself out the door for those breaks!

Also, are there any activities you might be able to get him to do, such as sorting silverware, folding linens, etc? Even if he gets it done, reset and give it to him again. Whatever activities he would do, just to keep him occupied, even for 10 blissful minutes!

Whatever he does now, that could change at any time. Hopefully it will be something better, not worse! Mom begged YB to take her back to the condo those first 9 months. She whined and begged for her car back when we took that away. She eventually forgot the car, initially changed her story to SHE gave it up before dropping it altogether and as noted, forgot the condo and focused on our previous house. She even associated her mother with that address. The wiring gets mixed up, and we never know what might come out!

Hopefully you can find some in home help, or a day care place, if they are open. Eventually he may need to be moved to MC, but one day at a time, one small step at a time! Get help and respite for yourself, so you can think clearly. We're always here for you to vent or ask questions. Many of us have been in your shoes...

Perhaps you could ask the neurologist or your spouse's primary care md for a referral for some type of respite to give you a break. I am burned to a crisp myself, but used to be a psychiatric mental health NP, so I know what to do, have provided care and coordination for my mom for several years, but seriously need a break, because of my mom's personality structure, obstinance and I am simply tired, as I am sure you are. I asked her primary care md to check what might be available, since my mom unfortunately cancelled her long term care insurance several years ago, sure would be helpful for home care now. I don't have it figured out yet, but will be talking to several organizations next week to see if we can get started, to provide me with a break, I know my mom will worsen, so I need to get prepared. I hope you will find someone to help you.

First of all you need to take care of yourself first. Your no good to your husband if you’re already at your wits end. I suggest that you contact a social worker who can put you in contact with professional caregivers who know how to deal with Alzheimer’s patients. It may take a bit of time to find someone who your husband will accept like a friend. I want to remind you that it will not be an easy task. But you have got to find someone, so you can get some much needed respite. You might want to eventually want to make this a monthly routine or sooner. Good luck and DO NOT feel guilty. I cared for my mother for several years. It was difficult and heart braking at times. But you can and should do this for yourself and your husband.

In Florimond' s situation I agree to see an eldercare attorney ASAP. Get the separation of finances started to eventually qualify for Medicaid. It is a treacherous process and one false move can cost big bucks. Short term, read the book The 36 Hour Day, very helpful. And call an agency for someone to come at least 2 times per week for a few hours. They are dealing with all the precautions for Covid, and are considered essential workers. Also look into day care or over night respite. He will fight you on all of these but just gently tell him it is for you, he needs to help you. There is no point reminding him you just answered that etc. Also ask family members to kick in doing some of the research on finding an attorney, or gift you money for someone to come clean regularly, order meals brought to you any thing to help you and let you know you are not in this alone. Prepare to ramp up the amount of help you will need or find a facility you can trust to care for him. Ask if they offer a night or two of respite care. I have walked this road with 3 grandparents, 2 in-laws and my own parents. Prayers for all of you on this dreadful journey and God bless the caregivers everywhere.

Imho, you require respite badly through any means possible. Speak with the town's Council on Aging where they should have a social worker on staff. Start there. Prayers sent.

It's time for senior living. If he doesn't have any exit-seeking or other precluding behaviors, it's possible that he may be appropriate in IL with a bit of home care services added or in AL (rather than memory care which is really for later stages of dementia unless there are certain behaviors that can't be handled in AL). Your husband is still relatively young and that would be more budget friendly.

Start with a respite. Explain to your husband that you have some things that need taken care of (either intimate that you have a health issue or there's an issue with the house that will make it not quite habitable.... Whatever it takes to get him on board.

Then choose a place and move him in for a one month trial stay - nothing shorter. A couple of days or even a week don't get you the respite you need and settling him in will be tough.

The first step is the hardest, but don't delay taking it. Your husband's dementia will take you down before it takes him down. I've seen it happen many times.

Why is it important that your husband put a name to his decline? It doesn't change anything. Live day-to-day.

OMG! I feel like I just wrote about my life. The only difference my husband was diagnosed 8 yrs ago at 58 yrs old. It is so difficult when we cannot even talk about his Alzheimer's and share the future. I am blessed to have had 7 yrs of a great marriage and enjoy our life together before everything turned upside down. I do not want to lose my life or me in this disease that I do not have but seems as though you do. You are right there is nothing the medical field can do for us. No one sees what I do with my husband and trying to explain it to family that does not want to help does no good. It is good to know ther eis a name for his not accepting he has Alzheimer's which everyone kept telling me he was in denial. Thank you for sharing and may God watch over you.

I did want to say the best book I ever found was Untangling Alzheimer's by Dr Tami Cummings. It is way better than 36 hours.