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Another difficult choice

October 16th, 2015 at 07:19 pm

So the people at rehab have been anticipating discharging my mother mid-next week. The assumption was that she would return to the resort-like Maplewood. Earlier my viewpoint had been, the sooner the better, in my hope that a familiar (?) setting and routine could help her gain higher functioning.

I was not prepared for the bombshell told to me by Maplewood tonight.

They had sent their nurses to rehab to reevaluate my mother's level of functioning. She's in noticeably worse shape mentally than she was pre-surgery, but she did make progress with physical rehab. She can walk, but she must have a person with her, guiding and cuing her.

The problem they described, which I was already aware of, is this: Now that the initial pain from the surgery is gone and my mother is feeling better, she is becoming more eager to stand up out of her wheelchair and start trying to walk around on her own. She doesn't understand how frail she has become after 5 weeks of largely sitting in a chair or lying in bed (the 1st week in the hospital, post-surgery). She has no doubt lost muscle mass.

So she is lacking in muscle strength and has balance issues. No doubt this contributed to her fall last week at rehab.

So combine this imupulsivity to rise out of the chair with worsened dementia and you have another fall waiting to happen. Fall prevention has become top priority, front and center.

I spoke with Maplewood tonight after work, 3 of them on the call, and they are recommending to me that I hire a round the clock aide to be with her, indeed, to live with her in her little room, at Maplewood. The room's not that big to begin with. Assuming my mother would accept this, I'd have to get a cot or a couch. The alternative would be to hire 2 aides doing 12-hour shifts who would not sleep overnight, although Maplewood said it's actually cheaper to pay for someone who would sleep there.

They are not permitted (not sure if it's state laws or just their regulations) to restrain someone with a seat belt to their chair, and they won't use bars on the bed to keep them from getting up in the middle of the night. Although Maplewood is dedicated to "memory care," they don't have the capacity to have someone at her side 24/7; hence the need for the aide.

Not to say the aide would be required for as long as my mother lives there, but no one really knows what will happen.

With the sale of the condo, combined with what remains of my mother's brokerage accounts, I have a total of $238,000 in assets. That's it, except for another $12,000 a year in Social Security.

The estimated cost of the aide, plus Maplewood's rent, is (get ready) $12,000 a month, or $144,000 a year. With the assets I just described above, that means that instead of my mother's money lasting her about 3, 3.5 years (based on paying the current $5800/mth), her money would now last about 1.5 years at most but more realistically, 1 year (there will surely be out of pocket costs I'm not aware of now).

Of course they want me to bring her back and they made their case for bringing my mother back to hopefully familiar surroundings in their lovely facility with the great food where they would aim to get my mother walking again with a walker. But I would have to have the aide there.

The other option, they pointed out, is to put my mother in Masonicare's nursing home, with an aide, and that would actually be more expensive ($14K to $15,000/mth), plus it's a nursing home setting.

Why not give her one more good year in the Maplewood environment, they said. Then she'd go to a nursing home like at Masonicare.

All very compelling, after I gained my speaking voice back.

(There is a 3rd option, which they also touched on, that of keeping her in Masonicare assisted living, which is a bit cheaper than Maplewood, but presumably (I haven't had a chance to talk to the social worker there yet) it would also require an aide with her. When I wheeled my mother around once to that end of the building (It's a large wing) i wasn't crazy about what i saw because there was no one around; presumably all the residents were locked inside their rooms alone. Don't really know that, but the place was very, very quiet.

After I hung up from them, I talked to 4 key people in my life: 1. my 2nd cousin. Unfortunately, she was all shook up because she had to put her dog to sleep. We talked a lot about that but also my mother's situation.

Maplewood had urged me to push Masonicare to give her at least 1 more week in rehab becus they felt it could make a big difference in helping her regain her strength and balance and I believe there is some leeway there.

Medicare will continue paying for rehab only if continuous improvement is being made; once the patient "plateaus," they don't want to pay. So on the one hand Masonicare had told me they felt she'd gone about as far as she could, while also telling Maplewood she was regaining her strength a little every day. So which is it?

And my cousin agreed that this is the first thing I should try to get them to agree to, to extend her stay there for at least another week. I'll have to wait til Monday to talk to the social worker.

Next I talked to my dad. He couldn't really offer much good advice as he has no real knowledge of how the healthcare system works, but i still wanted to update him on what was happening.

Then I talked to my friend R. who surprised me by saying he thought I should put my mother in the Masonicare nursing home, because the money would be spent down anyway and my mother's only going to get worse. He only said that after asking if there was any way I could move my mother in my home with me and have the 24/7 aide live here at my house. It would be a lot cheaper than getting the aide at Maplewood. I agreed it would be cheaper, but I don't want to do it. I have done a lot for my mother but I don't think I can give up my life and my own sense of privacy in my home. Even with an aide here, my caretaker responsibilities would be round the clock.

I sometimes have felt close to a nervous breakdown, quite honestly (long, rambling posts here are one way i have of coping with the stress) and it would again put me in the position i was in before I moved my mother into assisted living, meaning that whenever there was a crisis that the aide couldn't handle, I would get a phone call. Having MS, stress...of the extreme, chronic kind....could also trigger an MS relapse, and then what use am i to anyone? So no, I can't do that.

Lastly, I talked to my friend D., who pretty much said the same thing as R, move her into the nursing home or assisted living there if they'd take her that way, but he was much more convincing and patient about talking me through all the reasons why.

He reminded me that I shouldn't feel I have to make every decision based on what's best for my mother. That I have to factor in my own well-being too. And the well-being for me, in keeping mom at Masonicare assisted living, would be that by doing so now, I would be guaranteed a bed in the nursing home when she needed it. If I had her at Maplewood, I'd be on the wait list for Masonicare and there would be no guarantees a bed would be available when I needed it.

If they wouldn't take her at Masonicare assisted living, then the other option is their nursing home. Again, if she was already at Masonicare, in whatever capacity, I would have the peace of mind of not having to worry about moving mom yet again. (I would have to move her now, but probably one more move now rather than later would be easier.)

My friend D. reminded me that there is no wrong decision, that whatever choice I make, no one's going to accuse me of not being a good daughter or of not taking care of my mother.

As usual, I have to make a decision in a hurry. While I was able to talk to Maplewood tonight after they did their assessment, I was not able to receive Masonicare's assessment and will have to wait til Monday. Luckily, I have the day off from work. And the plan was to move her Wednesday!

So I have a really important decision to make. I had earlier been dreading having to move her from Maplewood now, one reason being that i have leaned on my handyman/carpenter a lot in moving stuff out of mom's condo and i happen to know that he is extraordinarily busy so i really didn't want to have to lean on him one more time to help with a move of her stuff at Maplewood.

My friend D., although he has a pronounced limp from a hunting accident as a teen, offered to help me move her stuff if it came to that. He has a van and they have elevators there. It's basically 2 small wood dressers, a twin bed and a nice wood table. The rest is small stuff. I was so relieved when he offered to help. I had been afraid to ask him on account of his leg.

Any comments? What would you do? It comes down to should I make a decision based on yes, return her to Maplewood for one super expensive, good year, then finding a nursing home for her when the money runs out, OR keeping her in the facility she's in to ensure there's a space for her in the nursing home and I don't have to move her anymore after this time.

Even with a 24/7 aide, I don't think there's any guarantee she won't fall again. I could see an aide getting bored spending so much with an old lady and she could get distracted by something or leave for a moment, and then bam. Mom's down on the floor. And at Masonicare, they have bare hard tiles; Maplewood is all carpeted.

But on another note, I don't think my mother is as aware of her surroundings as she used to be. I haven't heard her say at rehab oh, this place is depressing, it's so institutional. She hasn't said that becus of the dementia because any normal person would feel that way. So bringing her back to Maplewood might not make any difference, even though it looks so much better to me.

10:30 pm UPDATE: Unbelievably, shortly after I posted this, i got a call from Masonicare. My mother fell again. She was sitting in her wheelchair and she somehow tipped it backwards and fell backwards. She told the nurse she hit her head so she is on her way back to the hospital. I can't take this. I was on the cliff and the nurse gradually calmed me down. She said they will put "bumpers" on the wheelchair so she can't tip it. WHY DIDN'T THIS THEY DO THAT BEFORE? She also asked for permission to use a velcro belt around her which my mother could undo, but it would then set off an alarm. AGAIN, WHY DID YOU NOT ALREADY DO THIS?????????????????

17 Responses to “Another difficult choice”

  1. davera Says:

    I am so sorry to hear this, and send best wishes to you and your mom. I agree there is no wrong decision - you're clearly doing what you believe is best, given the info you have. Another factor to consider is that her worsened dementia may be temporary and due to pain medications and stress of the surgery and new surroundings.

    My elderly aunt had moderate dementia prior to a hip fracture. After surgery, she was severely demented while in the rehab facility. But after several weeks back at assisted living, she was weaned off the pain meds. She had significant improvement in her cognition and is now back to where she was pre-surgery. But she has no memory of the fracture, and we worry about her remembering to use her walker at all times.

  2. FrugalTexan75 Says:

    PS I am so sorry to hear all this. I agree, there really is no wrong decision.

  3. Livingalmostlarge Says:

    I am very, very sorry to hear about your situation. There is no easy answer. My mom was a medical social worker for 35 years and has dealt with these types of situations. No matter what you do you will feel guilty, but you shouldn't. You are making the best decision you can with the information you have in front of you. You are trying your best for someone you love and no one can fault you for that. There is no right or wrong answer. Only the best decision you can make at this moment.

    First is there a licensed social worker who knows the ins and outs of the system where you are? One that you are working with already? Someone who can guide you through the loopholes and suggest what the best course of action for care is? I say that because often times my mom would guide people based on her years of experience with time frames, seeing patients and their deterioration, etc. If there is someone then talk to them. Usually they can also help give a unbiased viewpoint of your mother's condition and suggestions that can be helpful.

    Second, I lean towards moving her now because I know that waiting lists can be problematic when you need a bed in a nursing facility and it's not available. I agree the dementia might be symptomatic of being in unfamiliar settings.

    But whatever you choose it will be the right decision. Good luck and prayers.

  4. Laura S. Says:

    I am sorry you are going through this. Your situation is much more critical than mine, but I can relate to a point. My mother has been in and out of the hospital five times in the past month. The "What next?" is so stressful. I am fortunate my mother has her faculties (She is only going to be 67 next month) and my father is there to take care of her. I know how stressed I am and yet you have so much more on your plate. My thoughts are with you.

  5. PatientSaver Says:

    Thanks, everyone. Davera. She is now completely off the pain meds, atho there are now other meds in the mix....a mood stabilizer, for one....that could be affecting cognition. I can barely keep up with what they're doing ....

    Of course I'm still thinking about what to do, but I've changed my mind about 3 times already.

    At this point i'm leaning toward keeping her at masonicare, but in their assisted living, with a live-in aide. I'd have to buy her a twin bed too, I think, unless Masonicare has one to spare, and I'd have to think about how to winnow down what my mother currently has in her room at Maplewood to make room for the live-in aide, her bed, and room for her clothes, at a minimum.

    However, I remember talking to the admissions director there to see if they even had assisted living rooms available and she said yes, they have several, but they're studios, which are smaller than what she has now. So I don't know how an extra person would fit in there with my mother, and of course if i get a bigger room, it will cost more.

    I'd spend down the money not quite as rapidly as I would at Maplewood and when the money ran out, she'd go into their adjacent nursing home under Title 19, without the aide, and no longer with a private room. And that's the best I can do.

    My thoughts a while back that I might delay my retirement and continue working to I could keep paying for assisted living are pretty much out the window now, because with the doubled cost of rent with the aide, at $144K a year, I couldn't earn that kind of money anyway.

    It's not a perfect choice. I do have some issues/concerns with them. One is the food, but i did already discuss that with them and they are willing to make some adjustments to make things healthier. Another concern is that the Maplewood people, when they went to see her to reevaluate, is that they both said her face looked very yellow and jaundiced. I hadn't noticed this. But this could be a sign of liver toxicity with this new med she's on. I have to talk to masonicare today becus they're supposed to be doing blood tests to check for that.

  6. VS_ozgirl Says:

    Very sorry to hear about the latest news, your poor mother cannot catch a break! You are doing the absolute best you can do, I'm sure your mother would be so proud of you if she had the slightest understanding of what you are going through.

  7. AnotherReader Says:

    In your shoes, I would keep her at Masonicare. Maplewood is not equipped to care for her and even with an aide, she will likely fall again. She may no longer able to appreciate the better quality of life at Maplewood anyway, although the medications she is taking now may be impacting the dementia.

    At her current rate of decline, she may need to be in a skilled nursing facility within a few months, not years. LAL has a good idea, a medical social worker that can evaluate her condition, rate of deterioration, and current/future housing options.

  8. CB in the City Says:

    It appears she is not very aware of her surroundings, so the ambience of Maplewood might not be as important to her as it is to you. I would focus on the care. Where is she getting the best care? It's probably hard to tell, I know. I do agree that the waiting list for a nursing home may become an issue, and perhaps it is better to stick with Masonicare, with the understanding that they will move her into the nursing section when the need arises.

    I am so sorry you have to deal with such difficult issues; you are very much in my thoughts!

  9. creditcardfree Says:

    ((Hugs)) All good advice above. Prayers sent for you and your mom.

  10. Ima saver Says:

    I am thinking of you and hoping for the best!

  11. davera Says:

    Yes, my aunt was also put on an antidepressant drug when she was in rehab. She was weaned off it as well within a month. The elderly are so much more susceptible to psychotropic drugs, even in tiny doses.

    By the way, here's another consideration. I don't know if small residential care homes are licensed in your state, but that has been an ideal solution for my aunt. She is one of 5 residents in a regular home that has 1.5 full-time caregivers who prepare lovely home-cooked meals and ensure that all the residents are nicely dressed each morning and get to the dining room for breakfast.

    Her room is sunny and adjoins a patio. She has a private bath, but showers with help in another large common bathroom. Residents who need help with continence are also assisted.

    The home is run by a kind and expert couple who were originally from Romania. They have beautiful gardens surrounding their home, with fruit trees. The woman is the director, and she has skill in nursing and natural, gentle remedies.

    The best part for my aunt, in addition to the highly individualized care, is that she can stay there even under hospice care. So she will never have to move. She would have been overwhelmed and unable to navigate in a large assisted living center with lots of activity, and she was not in need of a nursing home.

    The cost is $3500/month, which is an incredible value. Other homes in the area have monthly fees ranging from $3500-6500. We rejected the ones with tiered fees, that charge extra for med administration, additional care, etc. Hers is an all-inclusive price. Some of the residents are in their late 90's and have been there for a decade.

    Of course, it required a lot of due diligence to select the right home after visiting and interviewing about 12. But it may be worthwhile to ask the social worker about this kind of alternative for your mom. It's what I would prefer if my children had to make such a decision on my behalf.

    Nevertheless, as the kind director of this home told us at the outset, there is nowhere that can guarantee against a fall. It can happen in a split second, even when under supervision.

    Good luck, stay strong, and you're in our thoughts.

  12. Joan.of.the.Arch Says:

    My gosh, it is just impossible to know what is the better way to go. And decisions have to be made, remade, unmade, made again....I do hope you will protect yourself from an MS relapse. That's important; it is.

  13. livingalmostlarge Says:

    Care homes are a possibility because some do move into hospice care. Again a social worker familiar might be a help because where I am from quite a few social workers run care homes with their family members. There were two social workers from the Phillipines who were social workers with my mom who ran care homes with their husbands and families. They often times supplemented by hiring RN and such who needed extra work. It is not $3500 more like $8-10k but usually because they are experienced they also know when to help the family decide to move to a long term care facility or hospice, etc. It is not an easy decision, good luck.

  14. LuckyRobin Says:

    I have been through this twice with my dad and my grandma. Well, three times if you count DH's grandma. And that's just with dementia. Once with stroke and 2 times with just old age and falling if you count all of DH's other grandparents. I would make the move to the nursing home now. Once they start falling multiple times the deterioration is so rapid in both the physical and mental states that it really is the best option. It is a hard decision, but looking back on everything we went through, this is the best advice I can give you. Things will continue to decline. Best care now will be from the nursing home. Also, don't be surprised if she contracts pneumonia. Multiple falls plus multiple hospital visits equals low resistance and exposure to the elements via ambulance.

    It is okay to make this decision. It is okay to realize you can't do it all anymore. It is okay to take that step back. No one ever tells you that. But it is okay. You've done a lot. At some point it will have to be enough. It is better that point be now than once you've done your own health in. Hang in there. I continue to pray for you.

  15. snafu Says:

    {{{Hugs}}}}, I'm so sad your mom is suffering multiple falls. Davera makes an important point explaining that side effects from drugs can impact cognitive function. LAL makes a good point suggesting assistance from a social worker who can guide you through these complex decision streams where knowledge and experience are key factors. Please take care of your own health

  16. maryadavies Says:

    I think finding a social worker that can help is a very good point.

    All I can say is hang in there and I'll be praying for you. My gran had a serious fall and broke her hip too. Now, she had said never put me in a nursing home. We compiled, but I wish we'd gotten her a live in nurse a long time ago. One that wouldn't steal from her. (She had gotten someone who robbed her blind, tho i'm glad she didn't find all her caches of jewelry. Finally got that lady to leave but it still makes me steamed to this day) I'd been doing nurse's aid stuff for her (clean house, check on her, etc) but that was about it...She was the relative btw that you never wanted to be around since she tended to be mean and unpredictable.

    One thing led to another, and Grandma spent her last days, in my sister's room, in hospice. She died within a month of the fall.

    I'm not saying that your mom will go that fast, but try not to stress out and take care of yourself.

    As for me, I'm going to make sure I can go into a good nursing home if I need it. I don't want to be Grandma. >.

  17. rob62521 Says:

    I am so sorry. You have been through a lot and it seems like it keeps coming. I have no answers or advice, but I am thinking of you and said a prayer for you and your mom.

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