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?
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.
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
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.
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.
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.
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