Is there another answer for my husband with Alzheimer's other than the memory care I placed him in 3 months ago? I am so discouraged. - AgingCare.com

Is there another answer for my husband with Alzheimer's other than the memory care I placed him in 3 months ago? I am so discouraged.

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We made the change because my children were concerned about the effect caring for him was taking on me. He was diagnosed 8 years ago, is 68 now, and has been declining rapidly over the past 2 1/2 years. The disease has taken a big toll on him physically, as although from appearances, he seems quite healthy, he has significant trouble standing from a sitting position, moving from a chair to a wheelchair, walking, and getting in and out of bed. He was assessed yesterday for some physical therapy at my request, as he has quickly declined in his ability to move around, but it was suggested that because of where he is physically and cognitively, Medicare will probably not want to cover services after the initial 2 to 4 weeks. I wanted so to keep him at home with me through this journey, but because I had a back injury a couple of years ago due to severe osteoporosis (I crushed a vertebrae from a fall), my family felt the memory care was the best answer. I have tried for 3 months now to come to peace with the situation, but I am not sure this was the best decision. He has fallen 4 times since the change, his behavior escalates often to agitation and he is regularly given medication to calm him down that causes him to sleep alot. Whenever I come in during one of these episodes, he calms down within 5-10 minutes with no medication. He is also on meds for hallucinations and paranoia, which I have no objection to. But I have not been satisfied with his personal care at times, as I find him soaked through to his clothing, or his bed missing linens except a sheet for him to lie on and a blanket to cover his body. He lost 14 pounds in a little over a month being there, and when I discussed this with the medical staff, an appetite stimulant was suggested. I was against this, as his problem is not appetite, but that he needs assistance when eating. Most of his food was ending up on the floor. I am there for at least one meal a day to help him, but I have requested assistance for him when I am not there. All this to say I still feel that he and I would both be so much better off if he were here at home with me so that I could control all these things. But physically I am not able to get him up and down. We have LTC which has covered a significant portion of the memory care but I am still paying a lot myself. However, looking at the cost of in home care and what my LTC would cover for him to be at home which would be 3 hours per day, I still don't think I could personally pay for more than 5 hours per day myself. Is there anything I have overlooked that possibly would provide for me to be able to bring him back home and allow me to oversee his care? I am not sure how hospice works or if it could help to provide enough for me to fill the gaps. I am just so sad and frustrated that I have made this decision to entrust him to someone else's care, yet I feel he is not receiving the care I could give him at home if I had more help. Am I being unrealistic and irrational here? Any thoughts and suggestions would be so appreciated.

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Yep, great suggestion TNtechie! I would suggest that also. I hope everything goes well with you and your husband Jacksonsmimi.
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Reply to natnatroswell22
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TNtechie, thanks for great suggestions on meal assistance. I have already actually been thinking about this because, having been blessed with 14 grandchildren, and a number of them in the area with drivers licenses, I have thought about asking some of them to help me out on a regular basis with this. I know it would also be good for them to care for their papa in that way. And thank you to others who have helped me to look at some of my issues in a little bit different way.
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mimi, I see that you come by for at least one meal a day. Would it be possible for your children or other family/friends to come by on some kind of rotating schedule for meals? Although the staff should provide this support, it is often the first thing dropped whenever the staff get very busy with other patients. We had good results getting the extended family (in-laws, siblings, cousins) and friends to assist with meals: once a week, every other week or even once a month. Our LO stopped dropping weight and overall care seemed to improve too. People volunteered for the meal/date they wanted to cover and we sent out a calendar every month with everyone's phone numbers on the back. If something came up and someone needed to "swap" an appointment, the phone numbers made that easy. Occasional holes in the schedule didn't seem to be much of a problem when most meals were covered.
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With your physical limitations you can not safely care for him yourself. So if you were to bring him home you would need a caregiver for most of the day.
If he fell at the facility he most likely would have fallen in your home. Falls happen when balance is compromised and judgement is compromised as well.
As far as bed linen goes, often when having to help a person in bed the fitted bottom sheet is a problem, it can wrinkle. A flat sheet over the mattress is easier to grasp and help you move someone up to the head of the bed or move down a bit if they happen to sit in the wrong place when getting into bed.
You sy you found him soaked...that happens the question is how long had he been soaked? Did it just happen in the past 10 minutes? or the past hour? makes a difference. I could change my Husband and 10 minutes later there would be a puddle under his chair. (Heaven knows where it all came from I just took it as a good sign his kidneys were working ;) )
Loosing weight can be a sign of other things other than most of his food is ending up on the floor. Yes he may need help eating. But is he having problems with regular food? Does it need to be cut smaller for him? Does it need to be pureed? Do his liquids need to be thickened? All part of the process.
Just a thought you might want to see if he qualifies for Hospice. This will give you another set of eyes on him a few times a week. It will give you the ability to have a volunteer come in and keep him company so he gets a little extra 1 on 1 attention for a few hours once a week or once every other week depending on the schedule that is set up. Hospice does not mean he has "6 months or less" my Husband was on Hospice for a bit over 3 years.

You can be a better Wife and be able to relax and have a pleasant visit without having to worry about what to do next. Be a good advocate. Hold hands, have a nice chat, take a walk.
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Reply to Grandma1954
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Thank you to all for your comments and suggestions. I plan to ask for a meeting ASAP to confront the issues.
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Reply to Jacksonsmimi
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Ditto on the previous comments. I will add that you should be looking at other facilities in the days that you are waiting for the conference to take place. That way, you can form a back-up plan.
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Reply to XenaJada
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Before you remove him from one facility and place him in a different one, call a Care Conference meeting at his current facility. Ask that as many people as possible who have contact with him attend, including the Director of Nursing, his aide, therapists, financial coordinator, Social Worker and even the Dietician if you feel it’s necessary. At the 3 month mark, you should have been contacted for one of these meetings as resident’s families are entitled to one every 3 months. Take your concerns to them and don’t be at all afraid to advocate for him. There is no reason why his bed should be short-sheeted and he should be left to lie in his own waste. Present your issues in a calm but firm tone and listen to their answers. You want answers and not excuses.

As a fall risk, he should be in a room closer to the Nurses Station to make it easier to watch him. If he eats in the dining room, an aide should be sitting with him to assist or feed him. Request that. As far as the therapy, ask the financial officer about Medicare. Therapy may be ineffective at this point but it’s worth a shot.

I hear through your words that you feel you may have been “railroaded” into making this decision by your children. Who scouted the facilities? If you do relocate him, this time you’ll know what to look for. Often, when we are too close to a situation such as you are in, we don’t see what others, especially our children see. I know my children think their bedridden father belongs in a facility but we can’t afford it and are “too rich” (ha ha) for Medicaid. Their dad would be dead within a year if I placed him. He’d have to be on Medicaid and have a roommate. As his mind is sharp, he would hate this and be miserable. Of course Hubby would get better care at home with you; for a while. His health will continue to decline, and if you charge yourself with his 24/7 Care, so will your’s. If your children are like mine, they have their own busy lives and we are loathe to call them for help.

Hubby needs to be in a facility. I know you’re having a difficult time with this. Seeing the shoddy care he’s getting doesn’t make it any easier. Call the Conference and see what they say. If you feel blown off and b.s.-ed, start looking for another facility.
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Reply to Ahmijoy
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Finding him soaked is NOT acceptable. Are there other facilities in your area to consider? I believe you understand that you can't take care of him at home. But don't be afraid to advocate for him at his new home. Meet with the Executive director to seek help for meal assistance and keeping him dry.
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Marcia7321 Jul 16, 2018
I just want to say that finding someone soaked is not really an indication of neglect. I would check my loved one in home hospice care- she was fine- then come back from making her a cup of tea and she was soaked to the point of having to change the sheets under the protective mat. It happens fast.
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Have you considered that he may need nursing home care at thus point?
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