Caring for FIL after death of MIL

ajzjmsmom · May 11

My FIL was DX'd 2 years ago, at the time my MIL was his caregiver and after the DX, he stopped driving, she took away his cellphone and computer and basically directed everything he did. As with a lot of octogenarians they are very private about their health/finances, so other than being told he had dementia nothing else was discussed. Fast forward to Jan of this year, she was hospitalized and we realized just how bad he had gotten and how much she was covering up, then in March they DX'd her with leukemia, started chemo and 30 days later she passed away.

He is understandably sad and we are trying to figure out how best to help him. For now my SIL stays with him 5 days a week and we go on Friday afternoon and stay until Sunday evening, since we both work. They don't live in the same town as us and quite frankly we don't want to move where they live. The current caregiving situation is not sustainable, my MIL's house is not set up to house anyone other than the two and them and my SIL who has been the one that is there the most due to living in the same town is not on board with changing anything to facilitate it being more comfortable for my husband, he has knee, hip and back issues and the furniture and the stairs are not good for him and his issues.

At the end of the month I will be leaving my job and we would like to start in essence splitting caregiving time with her, since she has some health issues of her own and is burned out already. However, to split the time, we want to bring him to our house for the days that it is our time to take care of him, we will set up a room for him with his own bathroom. I know that this is not ideal but nothing about this whole situation is ideal. There is no POA in place or legal guardianship and my SIL has made it very clear that she is in charge. Denial about his dementia has played a big role with both my MIL and SIL and there are things that I definitely feel like were missed early on and steps that should have been taken.

This all being said, are there any suggestions on how to make this transition as easy on him as possible? Knowing what I know about dementia he is much further along in the disease than we thought, routinely doesn't recognize his two children, doesn't know what day it is, repeats himself constantly, has started going outside and definitely has some OCD behaviors which I attribute to boredom. My husband says his mother basically took everything from his Dad that he enjoyed out of fear.

We have discussed getting him in to see a geriatric doctor and he will see his primary at the VA in July. He is 100% disabled so there are quite a few things available but it requires that my SIL takes care of it, she had made it plain that while she will consult with my husband, she is in charge.

pamu · May 12

I have no experience with moving a PWD to my home but I’ve moved my mother twice…first to AL then MC. I know it’s not the same but I’m thinking the back and forth from your home to his home may cause him a lot of stress and confusion. He may even take a step back cognitively. If you haven’t already, start with some short visits to your home and increase the time he’s there. As you know, someone will definitely need to be assigned the POA asap to legally make decisions before a crisis happens…which inevitably it does. I understand your SIL’s stance in a way because she has been physically there longer and probably has a different prospective being their daughter. With that said it’s wonderful that you are making the commitment to step in and try to make a sustainable plan for all of you…because it will take all of you together work together to make this happen. Come back to this forum often for support and information. It has been a lifesaver for me.

SDianeL · May 12

I think moving him between houses would not be good. Too confusing for him. The VA provides in home respite and nursing care. You can also have him evaluated for hospice. Speak to the VA Social Worker about what is available for his care. The VA has nursing homes with Memory Care. My husband got great care there. Zero cost for 100% disabled vets and he gets to keep his disability money. If your SIL is in charge let her care for him. Sorry for being so blunt.

Redirect Queen · May 12

Hello, I am new to the group.
I’ve been a long time caregiver for all Alzheimer’s dementia, family members my MIL for about two years and then she passed and then my great aunt for about four years and she recently passed now caring for my aunt, which is just come down with it.

So in reference to question and concern about moving your FIL back-and-forth, my suggestion is try it. I do it with my aunt between two different homes. So I can give respite care to her eldest daughter who lives with my aunt in another state. I travel across two states to go to another home that we have two hours away from my aunt and I do bring her back-and-forth. I keep her in the same room and I keep things as normal in this house as I can for her. Then when she goes back to her other house, she goes back to that life. It won’t be easy, but it can be done in order to get respite care.

God bless. Good luck. It’s a long road. I’ve been doing it for six years. (oh and my aunt also is diabetic and can’t remember she eats and of course wears pull-up so it’s very challenging with moving her back back-and-forth.)

I have to plan very carefully when driving and using the bathroom. I recently booked a flight for her to come back to stay with me for about two-weeks. I had to cancel it because I realized there was no way she could fly comfortably due to her incontinence. I’m a retired flight attendant, and I don’t know what I was thinking (she would be able to fly) Realistically travel by car in our case is the best option in case she has an accident At least it’s not on an airplane full of other passengers.

ajzjmsmom · May 12

https://alzconnected.org/discussion/comment/272206#Comment_272206

This was definitely a big concern for us and yes we are very aware of all the VA offers him, free of charge. My FIL's next door neighbor works for the VA and I had asked her some questions about various aspects of who to talk to, while my SIL wasn't present for the conversation, my husband was, we did relay it back to her. She confronted the neighbor and was pretty nasty to someone who genuinely cared about my in-laws and just wanted to help.

I appreciate your bluntness, my SIL is stuck on promising her mother that she would keep her Dad home and take care of him, we didn't make any promises and never would have, knowing how bad dementia can get. At the end of the day it is in my SIL's hands, I have repeatedly mentioned getting the POA or legal guardianship but I am not sure at this point that a POA is even possible because I am unsure if he fully understands. I know she is grieving the loss of her mother and has other things going on but at this point and time it becomes all about my FIL and doing what is best for him.

I honestly thing that he would do well in a memory care/nursing home setting but getting her to that point will be a challenge. TBH she started this whole thing already run down and exhausted because my in-laws wanted just her to do any caregiving, I am not sure how long she can sustain this all.

psg712 · May 12

Agree that you need to have DPOA established, but if your FIL is too far along in dementia you (or SIL) may have to.go for guardianship. I think that moving him back and forth is going to be really hard on him. PWD don't adjust easily to changes in environment, and he has just been through the extremely hard loss of his wife/primary caregiver. That in itself will cause further losses in cognition.

What happens if he wanders from your home? Or falls and breaks a hip? Of course that could happen in his own home ... and it sounds like there are stairs and other hazards there. A plan B is needed as his needs will continue to grow. Acknowledging that SIL feels the responsibility to be in charge, it's commendable that you and DH want to provide respite for her. If the only way to do that is in your home, make it a 3 month stay rather than pulling him back and forth every weekend. That will give SIL time and space to rest, grieve, think more productively about long term plans for her dad.

I don't think that your MIL "took everything that he enjoyed" from FIL. The dementia did that. MIL did what she needed to in order to keep him safe as the disease progressed, and perhaps to shield him from the world (and the family) seeing his decline. Unfortunately now that she has passed, the family is hit in the face with the reality of his condition. My heart goes out to you. Kudos to all of you for working together to care for him.

harshedbuzz · May 12

@ajzjmsmom

Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

There are a lot of landmines out there in dementia care and your in-laws seemed to have planted them all. I can't say that their end goal was the wholesale destruction of their family, but they (especial your late MIL) have succeeded. The secrecy bordering on dishonesty. The insistence on the daughter to assume the role of primary hands-on caregiver to either avoid people in the home or save money. The lack of planning around LTC insurance and a well-written DPOA. And the deathbed extraction of a promise from one child that pits her against the very people who could help her. This is a hot mess.

First things first. Your DH and/or SIL need to get the legal pieces in place. If FIL isn't competent to sign, then guardianship/conservatorship is needed. You can't do any of the legal stuff medically or financially until this is done. You'll also need one to be a representative payee with the SSA as they don't accept POAs.

Once that is done, the sibs needs to do a deep dive into their medical charts to understand and medical conditions dad has and also their financials to see if there is a LTC policy or assets to buy respite care/placement if needed down the line. Given that MIL took away his access to the internet, there is a possibility that FIL was scammed or overspent leaving less money than you might think.

SIL is the bigger issue here. I personally would not be dictated to or play a role in any plan I did not support. Dementia destroys families and the risk here, given the steps your ILs took pretty much ensures this outcome. Your DH could start guardianship on his own. It's likely the judge would order as assessment of FIL to give you a sense of where he is. Your SIL would contest it and either they'd be ordered to share duties (meaning she'd have to agree with DH) or dad would be assigned a professional guardian who would place him.

To answer your question about FIL rotating between places. Do it. Your needs and comfort are as important as FIL's. It's said that it isn't ideal and even that it hastens the disease process. It's hard to say. My parents were snowbirds for most of dad's dementia stopping only when mom had a medical crisis in FL and dad was unable to function. During the 12 years they split their time between FL and MD he progressed fairly slowly. My friend had a house built and moved her mom into it in the later stages. Her mom did seem to lose some ground; she stopped doing her own laundry/using the microwave but was happy to be living in her DD's fancy new house.

I would also have a firm Plan B. If SIL's health is such that she could potentially crash and burn, then you'll want to have a shovel-ready plan in place for FIL. I would tour MCF and SNFs and pick my top 3. If there are waiting lists, put his name in.

HB

H1235 · May 12

I think moving him back and forth is going to be very hard on him. The bathroom is in a different place, the toilet paper is on a different side of the toilet, the chairs are different, the food is different. He is only going to progress. What happens when he is not physically able to travel? Consistency and routine are incredibly important for a pwd. I have a difficult sibling, so I can relate to that part. Thankfully I have the DPOA. Im guessing that when your fil and mil asked sil to keep him in his home they would not have expected the promise to be kept at the expense of his health and to be honest your husbands and sil. But I doubt there is any way to convince your sil of that. As people with dementia enter later stages they need a trained team of healthcare professionals to care for them. Your sil is determined to call all the shots, but expects your husband to just fall in line and help the way she wants it. That’s not right. If you and your husband say we can’t do this anymore he needs mc, what would she do. Probably try to do it all herself, act the martyr and of course your fil would not get the care he needs because she would be overwhelmed and at wits end. Your husband could try for guardianship, but he would probably have to fight your sil for it. These things can tear the sibling relationship apart. I have seen it first hand with my husbands family and with my brother and I. Even if he is kept in a private setting, I think someone still needs guardianship. Someone needs to be able to talk with the doctor and make decisions if he is hospitalized. You and your husband are in a difficult situation. I’m not sure there are any good choices.

ajzjmsmom · May 12

Thank you all for your comments and suggestions. I know much needs to be done and am hoping that when the VA social worker gets in touch with my SIL, maybe she can convince my SIL to take care of the many things that should have already been in place. At this point I am unsure what we will do if my SIL doesn’t get her proverbial ducks in a row.

ajzjmsmom · May 21

https://alzconnected.org/discussion/comment/272221#Comment_272221

Fortunately if my SIL crashes and burns, the VA offers respite care for him for at least 2 weeks while we get things figured out. Yes, this is a hot mess!!!!

ajzjmsmom · May 21

https://alzconnected.org/discussion/comment/272219#Comment_272219

TBH he stands a bigger chance of falling or wandering away in his current housing situation then he would in ours. My MIL and now my SIL allow him to go down very steep stairs to the basement bathroom because he likes it. My husband has expressed his concern repeatedly to both my MIL/SIL about the stairs and the danger they pose to him. A fall down those stairs would be devasting to him. My husband and I don't leave him alone and I know my SIL is taking care of him alone but the VA offered an answer to that and tbh I am not sure if she will take them up on it. She also likes to take him out but has said over the last 2 weeks that she sometimes leaves him in the car while she runs into the store or post office. He can be fast when he gets an urge and leaving him in the car, concerns me but he is not my Dad.

I am aware that change can make things worse, so we are definitely weighing all options but staying at his house on the weekends as a long term solution is not doable. My husband has knee, back and hip issues that is made worse by the furniture, bed and stairs at his Dad's house.

harshedbuzz · May 21

https://alzconnected.org/discussion/comment/272933#Comment_272933

I'd craft a Plan B given what you've shared here and in the other post you made. The respite care the VA promises may take some time to be organized. Often folks use respite for planned trips or their own medical care; you might have to wait if others have reserved dates. If it's inpatient, he may need medical clearances ahead of a stay.

Tour MCFs and SNFs near you now so you understand the process of admission, waiting lists and such so you're ready to move should you need to.

HB

ajzjmsmom · May 21

https://alzconnected.org/discussion/comment/272935#Comment_272935

His social worker has assured us in emergency cases that they will place him. However, if there was a time issue, he would come and stay with us. We do have PLENTY of help at our house for him and his issues.

Caring for FIL after death of MIL

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