Helping MIL and DH figure out how much care FIL w/ Alzheimer's needs
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Anonymous
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DIL here trying to help my husband and mother in law navigate what to do with my FIL (78). He has Alzheimer's. He is still at home. MIL (74) works full time and will be retiring in the next 4-6 months (she's eligible in January 2025). They are lower-middle income and have crap retirement savings. FIL was assessed by the state (Maryland) medicaid folks and qualified for nursing home care. He is incontinent, both urine and bowels. Can still sometimes have conversations, but generally does not know what is going on.
Currently, MIL works from home 2 days/week and there is a caregiver who comes for a few hours on the days she is in office. If she wants to go out somewhere at night, either DH, me, or a cousin go to babysit FIL. He should not be left alone at all IMO. I personally think this is a ticking time bomb as he has not done anything dangerous yet, but it could happen at any time. He is unsupervised for many hours most days. He cannot prepare food, he will not do hygiene, MIL can't get him to bathe/shower, caregiver can get him to do it occasionally. So he is rarely clean, and unable to participate in most activities. He does not leave the house except for doctors visits. MIL and DH were ok with the idea of a nursing home until they went to visit one and now they think a memory care/assisted living place is a better option, even though the cost is astronomical and will bankrupt them and they will be looking to us to supplement. They didn't like that the nursing home seemed like a place where everyone was a vegetable in a gown and feel that FIL is not that bad, where because it is not my dad and I am a level removed, I think I am viewing this a bit differently. The fact that a man who was once very social, fastidious with his personal appearance and hygiene is now unable to toilet, has daily accidents and can't really hold meaningful conversations with anyone says to me that his disease is advanced. They feel that because he can walk around the house unassisted and for example, occasionally go out to dinner with the family (though cannot participate in any conversation, select a meal, and sometimes will try to wander off from the table and have to be retrieved, or will say inappropriate things to strangers) that he is not nursing home level "sick." I think he only seems more capable to them because he's their dad/husband and if he were a stranger, they would see it differently. I also went through this with my own grandfather and in my experience, the progression of this awful disease seems like things are fine for a while and then go downhill really fast. I am worried about MIL being able to physically care for him as he is getting more obstinate with care tasks (the feeding, dressing, and bathing). MIL isn't very agile or in good shape. She has had one hip replacement and needs another. She is very overweight and it takes her a significant amount of time to go up and down the stairs in their house. In my opinion, SHE will be a candidate for assisted living in a shorter time period than they realize. She isn't capable of providing the level of care he needs and I am fearful that something will happen to one or both of them. Would you push MIL/DH to consider the nursing homes and perhaps find one that doesn't seem horribly depressing, or let them go forth with these plans for a very expensive assisted living/memory care? MIL/FIL have enough savings for max 2-3 years at the places they have toured, and IMO, if they can do the nursing home, they should, and preserve that money for MIL's care, because I think all are in denial that she will need significant care at some point too.... What would you advise? |
Anonymous
| You are absolutely correct in your assessment. Maybe talk to your DH about talking to MIL and explaining to her that if she doesn’t put him in a nursing home that she will end up with zero for herself. It might be enough to motivate her. The cleanliness thing alone should be enough to motivate her. Maybe help them look for a smaller, family-owned nursing home that still takes Medicare and is more homey. And, for anyone who says to mind your own business, the overall lack of resources on their part means it will become your problem at some point. |
Anonymous
| For now get caregivers 6 hours a day, they can do hygiene, get him dressed, and give him breakfast and lunch |
Anonymous
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Here is the problem, OP. If they are looking at MediCAID nursing homes, they will take the money your ILs have and leave the "community spouse" with a monthly stipend to live on. Depending on how long your FIL lives, they might also take the house.
Make sure you understand what you're getting into. |
Anonymous
| One person needing a nursing home and one person not needing it is a nightmare in terms of getting help from Medicaid. |
Anonymous
| As mentioned, there are memory care homes where registered people take in a few patients and care for them in their homes. Much less expensive than a private pay nursing home. |
Anonymous
OP here. Thanks so much. DH has engaged a lawyer to help MIL work through all this and we are figuring out this spend down process/an annuity/etc (I know I sound really uninformed here, I promise I’m not, it’s just so much to write on DCUM) I’m just overall so worried about know he needs far more care than he’s getting and it seems like MIL/DH are getting bogged down in feelings v rational decision making. |
Anonymous
OP, emotion is involved, no way around that. And while you are saying you understand the Medicaid process, then you know there is a 5 year loopback. If he needs care now what are you going to do? What I am saying is that you sound as if you want a scenario that doesn't exist. Nursing home is Medicaid--but you don't want to pay for it by signing over IL's assets. If he needs more care and you don't want to go the Medicaid route, and don't want expensive private pay, then look into the at home care places. I will also add, having been through this, if there isn't unlimited money for this, there are no great solutions and it's horrible to deal with for everyone. |
Anonymous
| ^^^ LOOK back |
Anonymous
| OP here. Yes, we know about the look back period. Bc MIL/FIL don’t have much $ and haven’t made questionable purchases during that period beyond some necessary home maintenance and a new (used) car when MIL’s car died, the lawyer is not too worried about that after reviewing all their financial statements. They haven’t transferred any assets to anyone because they have so little. |
Anonymous
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I think you should say everything you said on this post to your husband ONE TIME. And then, when he most likely ignores this, you let them do whatever they are going to do.
Then, after one year of their nonsensical solution, you see if they are ready to be more sensible. Then, if they are not more sensible, you begin talking to your husband about just how much money you guys can really afford to “help” when the money runs out. |
Anonymous
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My experience from parents and inlaws and support groups, is denial is so common when it comes to level of need. I would look into hiring aan aging care professional just to help ease the transition. Make sure you are on the same page-nursing home. That person can "sell it", even arrange for people to help with the move and then check on him at the beginning and advocate. That person can also help MIL let go of feelings of guilt and learn how important it is for her to take care of herself so she can be her best self when she visits him. Once transition is complete and the CM feels like things are working you can just fade off the CM and maybe hire her (usually her) again if you need help advocating in the future.
Yes it may look grim, but I can tell you hom-elife can look like a living hell when you have a burned out spouse who hates having caregivers in the home and you can't get rid of smells and things are ever declining sometimes rapidly. Often the souse starts declining rapidly too if burned out. It's a lot easier for your MIL to visit often so the staff see someone is watching and cares and then go back to her life and do all the things she needs to take care of herself. In the end it is healthiest for both of them. |
Anonymous
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This is such a difficult situation. Having been through it with my parents, relatives etc here are a few thoughts:
Contact your county's Council on Aging. They are really helpful and know what they are doing. They have access to a lot of resources and are supportive. And secondly the hygiene thing might be what ends up moving things along. FIL gets a urinary tract infection -- high fever -- ends up in the hospital. The hospital also has people who can connect you to nursing care. FIL can go to a nursing home "for rehab" and "until he is stronger" and given his situation -- that might never happen. Good luck -- it's really hard. |
Anonymous
Yes. OP, if he ends up in the hospital, you need to get him to go to rehab until he is stronger. MediCARE pays for X number of days, based on if they are improving or not. Also (and maybe even now) you can get a physician to write an Rx for bathing. Where I am they allow 5 days/week, each visit about 30 minutes. I am also pretty certain that most people who die quickly in nursing homes die from UTIs. And UTIs in elderly don't present as they do in younger people, so often people don't understand what it happening. |
Anonymous
+1 This! And you should be involved bc your money may be at stake. You and DH should also look at your finances and discuss what you are willing to contribute (if at all) and stick to that. Otherwise, it's an ever increasing funding burden than negatively impacts you and your family/kids. |