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Husband has dementia for over 5 yrs. and I am total caregiver. He absolutely refuses in house help and would be a great problem for anyone doing it. He is totally forgetful and knows he is, is aware most of the time but "sees" people or things now and then, and just sits in the chair and sleeps much of the day. I am exhausted from doing everything myself. When I have to shop or go to doctor, I leave him alone and he gets his lunch from refrigerator - and eats everything else he can find. He is diabetic, anxious, and does not like contact with other people he has known for years. The thought of putting him in a nursing home makes ME anxious -- he would be devastated and feel so alone without me. I guess I just need someone to understand. Can't afford daycare and there is only one in our town anyway, which is not up-to-par.
Any thoughts?

GET HELP FOR HOUSEHOLD ITEMS NOW & forget if he likes it or not because you could get ill/injured without help & where would he be then - tell him he can stay in 1 room with door closed if he wants to while cleaner is there - then you just need to clean that room or alternate which room he stays in

Get a kiddie lock for fridge & leave his sandwich/lunch on counter on top of an ice pack - he shouldn't be doing a binge eating & you are probably anxious the whole time you are away because of it

When my dad was in NH he only interacted with others at religious services & meals - he kept to himself watching his TV the rest of time whereas my mom was joining everything & having a ball - the writing is on the wall that the time is coming but there is no need for you to be anxious because he'll pick up on those feelings & might not make as good as transition as he could have

It is better for hubby to go a bit sooner than later as he will then still be able to find his room, dining room etc before dementia is so deep that he is lost all the time - can you do a few short time respite cares then take him home - start just 2 nights, then a week, then 2 weeks, then permanent - it would help both of you to adjust gradulally
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MojoMama Aug 30, 2018
Thank you for your answer. I would love to get him into respite care like you said, to just get him used to the idea. I have no idea how to find respite care but I am going to add it to my list of things to look up. And I know he will be devastated at first but I am starting to feel myself going downhill. He was my high school sweetheart and it just destroys me to see him this way.
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It is absolutely one of the most heartwrenching decisions one can ever make in a lifetime. My Dad had Parkinson’s Dementia...& lived at home relying on my Mom for total care until he became fully immobile. He was ambulatory from the home to the local county hospital before being admitted into a rehab facility. During that time...he had ups & downs. He told me not to worry about him...& mentioned he had gotten use to being there. Our family wanted to bring him back home but his advanced condition would not permit it. My Mom visited him daily...we were lucky in that way...the facility was regional. He lived there until passing at a hospital on June 9th 2018. I would be remiss to tell you what you should do. If funding is an issue...I can only suggest that you seek the help of Medicaid/Medicare in determining eligibility for facility care if you decide to move forward...& go see each location (before placement) whether you use a federally or privately funded elder care home.
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MojoMama:

You said: "What interested me was when you said get him on Medicaid. We have Medicare and have had no problems with his meds and doctor bills getting paid. Would he still need Medicaid as he is on my insurance plan....."

Medicare and any additional medical insurance is not the same as Medicaid. Your Medicare and other insurance cover doctors, hospitals, meds and sometimes for a short restricted period rehab/nursing homes. They also have very limited in-home services.

Medicaid is state funding to assist in the cost of nursing homes and SOME assisted living/memory care places (not all participate in this program). It is backed by federal, but has many restrictions, requirements and forms, and is income based. You would be best advised to see an Elder Care attorney to discuss your options - usually a first visit consultation is free, but ask what you need to bring (income, expenses, etc) to that first visit. If your incomes are over the limit, you don't want to have to pay for a second visit!! However, this attorney can also guide you on how to protect assets, set up DPOA if you do not have it already and he is still able to pass "muster" (anyone too far down dementia road will not be able to sign for this, better done sooner than later!)

As others have suggested, bring in-home care with the excuses of help for you, a friend, etc. These did not work for us as mom was living in her own condo and refused to move in with any of us. She also refused to let them in after a few months (only 1 hr/day, check meds, socialize mainly!) and we told her Medicare paid for it! They would not because she refused any "personal" care/assistance, such as bathing (did not need the help for that then). That is another option you could explore, although given he doesn't like "visitors" that may not fly... Was he a veteran? There are programs they offer as well.

When all said and done, you cannot let yourself get run down or ill trying to do it all.  If none of the suggestions work, you have to know when enough is enough and find a place for him. You should start checking out places now, as many have long waiting lists. If possible, get him on the lists of those places you like (visit multiple times, ask a lot of questions about costs, what is covered, etc and if they accept Medicaid, in case you qualify for that.)

Guilt will be there, there is no way around that completely, but keep it to a minimum.  Could've Would've Should've doesn't cut it! You'll eventually see this can be for the best as now you can spend your time WITH him instead of doing all the hard work!

Also, he sounds like he can still perform some ADLs - rather than a nursing home, consider Memory Care at assisted living places. Some NHs do have MC units, but to the best of my knowledge, nursing homes should be considered later, if LO needs specialized NURSING care. Help with ADLs can be done at AL and MC places.
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MojoMama Aug 26, 2018
I don't feel he is ready for any kind of placement yet as he is pretty able to dress himself, shower when told, etc. I just would like 2 days to myself with Daycare and the one facility we tried is just totally unacceptable to him -- and me. The cost is high but I would absolutely squeeze the money out. I am going to try the VA to see if there is any assistance there. Thanks for response...I don't get to the computer often.
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I hear you i'm in the same fix. My husband has Lewy Body Dementia. He hallucinates, he started out seeing men in bed with me, that passed then military working on the other side of the lake, kids all the time. he don't know where he is most of the time, or where the bath room is. he called the cops 2 times said there were bad guys in the house with me. he only started this in Dec. 2017, it was long spaces in between incidence the now it small spaces every day. I think his was induced by medications they gave him during his surgeries. they wouldn't stop giving him pain pills. then when he had his bypasses they had to open him again. then when he had a pacer - defib put in they gave him Fetnyl. he hasn't had a good time. But he thinks he is normal. Good luck I know when the time come it will be hard.
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MojoMama Aug 26, 2018
I am so sorry for you and having to handle this. I need to stop feeling sorry for myself because I see others have it far worse. We are all in a mess aren't we?
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Your husband will eventually get sick with infections, (hope he proves me wrong) and might be hospitalised. What worked for me is that my husband went for rehabs several times. Got somewwhat better and returned home. The last time he went for rehabe he did not return home. He never lost hope. When my husband was transferred from the hospital to the nursing home, he would be so ill. He thought he was still in the hospital. Just wanted to share my experience with you. I wish you both strength and courage to cope.
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Are there any board and care homes in your area that might be a possibility? Less "institutional" than a care facility.
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Sometimes what we’re sure will happen doesn’t happen. Your hubby may be unhappy for a while, but he may settle in. If he was aware of how this is affecting you, he would surely not want to be the cause of your stress and upset.

I am facing finding a facility for my husband as well. Previously, he was violently opposed. But as the years have gone on and he sees the toll it’s taking on me, his opinion of facilities has changed. He’ll never be willing, but he knows he will need to be accepting of the inevitable.

I am not one for in-home help. We have a large, protective dog who need to be locked up when someone comes over. Because of my caregiving, the house is less than orderly. We can not afford home delivered groceries. And above all, I feel “invaded” when someone comes to my home. But, wrong or right, that’s just me. It might work for you.
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If you are able to put him in a nursing home, do it. It only gets worse in time. If he is not on Medicaid you need to see an Eldercare attorney to get him medicaid ready. YOU SERIOUSLY need to do that. You say he can get up and get his own food. Believe me I'd give my right arm if my mom could do that again. I have to help my mom with everything. I have to cook, she will use the bathroom in her diaper (even if I put her on the toilet she can't figure out that's where to go so she holds it in) so I have to clean up. I even have to feed her. Getting her up is especially horrible since she's often like dead weight. Can you do all of that? The cost of her diapers, gloves, and ointments is $100 a month alone. She goes through about 4 or 5 diapers a day which is 50 to 60 cents a piece. her bowels I would say is 98% of the stress. because she goes in her pants it can easily set off urinary tract infection since stool will go in private parts can cause infection. Between laculose and timing I learned how to manage her bowels so she does not often go in her pants--but it took a LONG TIME to titrate her lactulose and pick up on subtle cues she needs to evacuate. BUT if she goes in her pants I have to IMMEDIATELY put her in the shower and wash her up good because of the danger of urinary tract infection. Nobody likes to talk about bowels but there is where most of the stress lies and incontenance (when they stool in their pants) is the top reason why people put their folks in nursing homes. It's true!

I don't know who old you are but that's what awaits you. Can you toilet and bathe your loved one? I had to get my bathtub ripped out (cost me about $10,000) to get a walk-in shower instead because there is no way she can get in and out of a bathtub. and you better keep a bowel diary--if they are constipated as little as two days in a row you can get an impaction problem which will require an Emergency Room visit and the nurse will dig it out with her finger. and if they have kidney disease you can't just give milk of magnesia or a Fleet enema since they can get magnesium or phosphate toxic (I use lactulose but I had to ask the doctor for it). And getting her to take her meds takes the patience of Job. She often clamps her mouth shut..crushing them is hard enough But I go through major stress just giving it wondering if she will take it.
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SuzyQ22 Aug 24, 2018
Why are you keeping her home with you?
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MojoMama - My mom was in exactly the same place. She tried to keep my dad at home and couldn't find in-home help for exactly the same reasons. I worked during the day but tried to help in the evenings. My advice is to start looking at various nursing homes and Alzheimer's facilities NOW because you will eventually need help. Visiting various facilities and speaking with administrators may help alleviate some of your anxiety. We failed to do that and ended up making an emergency (and quite stressful) admittance after my dad wandered off and was found quite a ways away and close to a lake. We had been proactive and placed address plates in his shoelaces so those that found him knew where to bring him home. My mom was at her wits end and knew she could no longer keep him safe (she accidentally left the door unlocked). It broke my mom's heart and my dad was devastated for about 2 weeks, but he eventually forgot where "home" was and settled in. My mom and I visited daily for almost 19 months. If we had planned ahead and visited all of the facilities, spoke with the Area Agency on Aging, spoke with the Long Term Care insurance people, joined a support team to hear from others who had placed Alzheimer's patients I think the placement would have been much, much less stressful and emotional. Now, 8 years later, it's my mom that is going to need care soon and I hope I'm much more prepared this time!
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cetude Aug 24, 2018
My mom started wandering and escaping at night 4 years ago. Now she is completely homebound and I have to help her with everything and getting her up is like dead weight. I'm by myself. I spent $5,000 installing a fence all around my property including electronic gate so she could not escape anymore. Door alarms also helped prevent the problem. Worked like a charm..however, now she's too weak to do any of that. I FULLY agree with nursing home placement..being a caregiver has made my life unbearable stress. it's hard work, horribly stressful, and unpaid on top of that.
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Help can arrive in MANY formats! Your overarching concern is hubby's care (I get that). But (as others have said) housekeeping help takes something off your 'to do' list. Ditto for prepared meals --- others can drop off, restaurants can deliver, meals on wheels, etc.
When I brought in help for my Mom, I didn't dump the companion on her. I introduced her as a friend and stayed there for the entire first visit. Well, I actually did step our for 20-30 minutes to run a very quick errand. So that helped Mom get used to this idea. The second visit, I was there when the companion arrived, stayed 10 minutes then told Mom I had an emergency dentist appointment. Little by little they eased into it.
Some organizations have 'friendly visitor' programs for seniors, especially shut ins. I see your husband is in his mid-80s. Are you near that as well?? Get help.
Some houses of worship provide errand running and visitor programs. So do some Visiting nurse associations. In my area, I have access to both of these at no cost.
Have any of your neighbors asked how they can help? clearly you wouldn't ask them to clothe and bathe your husband, but If they came once a week for an hour or so, after the first 2 visits or so (They can chat with you in another room) he might get used to some others in the house. Then, have them come when he is likely to be asleep and have a big written note from you they can show if he wakes up.
Is there any family??? Can they help. AND finally, to address your question about a facility placement. It is unlikely that you will travel this journey with your husband and not need to place him at some point. The facilities know how to handle such situations. AND for your health and sanity, it sounds like that day might be approaching. Good luck
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I agree with C Willie on using whatever means to get someone to help.
I would also like to suggest that you figure out what would be the point when you would get help?
In other words will you wait until you are so exhausted that you have no choice but to place him?
What happens when you need help for yourself?
Your ability to keep your husband home will be greatly enhanced by getting help for yourself.
And while you are thinking that you need a sitter for him, don’t discount the help it will be for you to have a housekeeper, someone to do the laundry, lawn care, whatever chores you are trying to juggle yourself. Maybe you can order your food and supplies for delivery...anything that will take chores off of you.
Have you spoken with the Area Agency on Aging to see what services are available for your husband?
I’m sure you are doing a great job but don’t forget that taking care of yourself is essential for both of you.
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Some people have gotten around this by bringing in help in disguise. Instead of telling him he needs a sitter you might try telling him your are bringing in someone to help YOU with the laundry or the housework, of course while they are there you take the opportunity to slip out to run your errands. Hopefully once he gets used to having someone else he may gradually be more accepting of other help.
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