Hello, I’m new to the forum and it’s been really interesting and comforting to read about other people's situations and advice! My mom, 85, has been living with me, my husband and 2 teenagers for the last six months. We’ve been taking care of her while she has a total hip replacement and regains her mobility. Mom normally lives about 8 hours drive away close to my older sister who was unable to take on the care during this operation.
Mom’s memory is getting worse, diagnosed as mild cognitive dysfunction at the moment. I’ve been trying to talk with mom about what’s next for her. We can’t keep her with us for much longer as it’s starting to affect my marriage and my relationship with the kids. I’m also an artist and getting to my studio to work has been really difficult while mom has been here. I’ve asked her if she wants to return to her home and if she thinks she could manage. She says yes but then says ‘but it’s so lonely there’. She has not made any friends or joined any groups or has any interests outside her direct family since dad died 26 years ago. Her support network at her home consists of my auntie and uncle down the street (they’re in their 70s and will pop in but can't offer much more than that) and my sister who is 62 and has been really good often helping mom with shopping, doctor's appointments and socially but who is finding it tougher and tougher as mom's needs increase and is unemployed herself, has very little personal support (no significant other or family of her own) and in her own words “is relying on drink to cope.” When I try to push mom further on what she wants and whether she can cope, she just says "I can’t think about that at the moment. I’m in too much pain." Her pain seems a lot better since the operation, which was about a month ago. Ideally for my and my family’s sake I’d like to get her back home in August (as long as she keeps progressing well mobility wise) but I’m really worried that it will end in her being unable to cope or my sister trying to live with her to care for her ( last year my sister tried living at mom's house for about 6 weeks and it ended with my sister drunkenly raging on the phone to me about my mom and the next day my mom was sobbing on the phone to me saying that my sister was going to abandon her - my sister said mom was hungover at this point but mom's not meant to drink much with her medication) I’m worried about both of them. I have 3 brothers, all living in different places, all offering various different levels of short periods of help mom but they don’t seem to want to take on anything but the easier less messy stuff and they’ve all fallen out with my sister as she can be really difficult and say hurtful things especially when she’s been drinking.
Anyway, how do I help my mom with her future if she won’t or can’t talk about it?
You may never be able to get your mom to make any decisions. Because my mom refused we had TERRIBLE issues to overcome.
So because you can’t get her to make any decisions about her future you need to start preparing. I would start looking at care facilities in your area as it sounds like you are the most reliable and probably will be doing most of the work. Start looking now. If you wait until she’s totally incapacitated it will be too late.
Start looking at the finances to see what she has and what she will be able to afford. Will she pay out of pocket? Does she have a home to sell? Etc, etc.
Next consideration is your states Medicade program. Will she qualify? What are your states spend down requirements? If she qualifies for Medicade they have a program for In Home Supportive Services. Separate application required. The state will pay for assistance such as laundry, light housekeeping, meal prep etc. You can select the provider from a list and interview them. Family members can also be a provider (if required) if they apply separately, background check etc. Perhaps this could help keep her in her own home a little longer.
Start keeping ALL receipts, bank statements, any financial paperwork. Keep ALL pages of all statements even if they are blank. If the statements say for example page 1 of 4, you’ll need all 4 pages. You’ll need all this for Medicade.
Get out the trust and review it thoroughly for any quirky clauses that will prevent you from executing the POA. There was one in my moms that my lawyer had never even seen.
Also check with your local Area on Aging council for some respite care options so you and your family can go out for a break.
Does your mom have funds you can use so you can hire some help at your home.
Sorry to go on for so long and I hope the response does not seem disjointed. This was a huge problem for us and it was a long difficult journey because of her indecision.
I provide my suggestions because of our experiences in this journey. I’m not trying to make extra work. Perhaps others have had better luck in this area.
Good luck.
We also showed her some really lovely bright manageable houses in a retirement village/AL near us just after a knee op about 6 years ago and as that was ‘too far from us’ (2 minutes drive) offered to find a place with a separate annex for her with us all while she could still make new friends, drive, go to church etc. But she just didn’t want to think about it or make a decision then either. It’s too late for any of that now and as time goes on it gets more and more likely that we’ll have to move for my husbands work anyways.
I just get so frustrated with my mom for not making any decisions to help herself when she could have made it so much better and less lonely for herself. No effort on her part to socialise, make friends, make any decisions for herself really since dad died 26 years ago. She refused all help from grief counselling and just ended up on sleeping pills. And he put her through such horrible times when I was growing up with his alcoholism and gambling with 5 kids to raise. He never drank again after mom left for a couple of months when I was 16/17 and it was only me and my brother (age 22) at home.
I feel mean but I’m no longer taking mom in the car with me to collect the kids and when I take them to their activities. I realised that this is the place my beautiful teens talk to me most and with mom up front it was stopping that. It works better for me and the kids but mom is still sometimes pleading with me to take her but when I get home again she’s ok. I still take her if there’s something interesting to watch though or if the kids have their friends in the car.
To clarify the timeline - Mom was with us for 3.5 months before her hip operation (we’re 5 weeks post op now) basically because I had a knee jerk reaction to my sister not coping and drinking. I felt like I had little option but to get mom out of the situation with the excuse of the hip op. I thought the op would happen much quicker but covid had an impact on the waiting time. So here we are 5 months later. Mom’s physio says she’s recovering really well, that her range of motion and balance are really good. She’s now on one stick to walk. I think she still is in pain but she’s not getting that really worn out drawn look at the end of the day which makes me think it’s better than before. Mom does have arthritis elsewhere so all of the pain won’t be gone. The difficulty with the level of pain is that mom seems unable to really remember what it was like before the op. The op was done using sedation and an epidural rather than general anaesthetic so not as bad for cognitive.
I've had the first Zoom call with the sibs. It was cut short as one brother had to leave for his dance lesson even though we’d reorganised the date around him. How do you work with that! Anyway it was quite predictable really. Sis went on about the only solution to keep mom out of care was to sell her house and buy a place where she wants to live for them both saying something like ‘I won’t allow you all to put mom in a nursing home’ - problem it’ll be a disaster with drink as she’s unable to cope with moms growing needs. Eldest brother wants to give mom a chance to live back in her own home with additional help in place - first checking moms finances for what is affordable, putting in walk-in shower, rails, Wi-Fi, whatever she needs - problem with this is that it’s so far away from any of us except my sister who is having problems coping and is drinking daily. My middle brother is the one that had to leave early and just agreed with eldest brother. Youngest brother felt finding a care home near him and middle brother would be good as they could share the visits and organising etc. Eldest brother and sister against this. Middle brother didn’t comment and he’s been distancing himself from everything so not even sure if he’s visit. All of us agreed that mom shouldn’t move to a new home anywhere that isn’t part of care home or AL. I’m the youngest. Part of me feels like mom should be helped to stay in her own home as long as possible but I’d feel better about that if mom was pushing ti go back - she isn’t and as some of you have said she comfortable here so why would she want to go back. Part of me thinks Care would be better as then we’re all sure she’s looked after and it would be nearer to more of us for visits. Mom will never agree to care though. I’ve told everyone that we need to sort this out by end of August. Next family meeting next week. Youngest brother coming soon to allow us a few days away
OK no-one is agreeing (yet) but talking to each other AND listening to each other. Big big wins.
See how all those thoughts settle for the week.
Home with supports could be Plan A? With AL near (to be decided) as Plan B..? Maybe..
If your family is a church or synagogue family sometimes having a leader along to join a family meeting can help. Someone trained in councelling can ask questions family members may not want to, or in another way that can be useful & highlight issues.
I do hope just typing has helped somewhat. That's why I came.. my DH could hear NO MORE 🤪.
Very astute observation that saying 'no' to your Mom sometimes, meant 'yes' to hearing the teen-talk! 😁
To point out the bleeding obvious, OP is always mother’s best option – in so many situations. The only way to change it is to make mother uncomfortable. Not waited on hand and foot, not ‘you come when I call’, not company and sympathy on demand, not all meals exactly what I want (and can still complain about), not toleration of incessant complaints.
Even two days of ‘neglect’ can change the dynamics radically. Mother won’t die if she is ignored for that time. No food, no diaper changes, no company – or whatever combination you find acceptable. This can be life changing, but not life threatening.
It can make AL (or even better behavior) suddenly seem a lot better than ‘no agreement’. Nothing else is going to work!
Presumably 3 of the 5 of you will agree that Mom needs AL. Sister can't take care of Mother any longer because of her alcoholism. If any of the 3 brothers don't want AL, then Mom goes to live with THEM. It's just that simple.
You have gone above and beyond. Unless one of your brothers wants to provide the kind of care that you have been providing, there is no other choice.
Where you wrote in your initial post, "When I try to push mom further on what she wants and whether she can cope, she just says "I can’t think about that at the moment. I’m in too much pain." Her pain seems a lot better since the operation, which was about a month ago. Ideally for my and my family’s sake I’d like to get her back home in August (as long as she keeps progressing well mobility wise)"
For whatever it's worth, I do understand your mom's claim, "I can't think about that at the moment..." and I will explain. Two plus years ago after major surgery, even though I was wholly focused on recovery, getting back to work, adapting to the changes that resulted, it still took much time to process what I was going through, to feel "ok" again, to live with and progress while in pain. Honestly, it was a big struggle for a long time but I progressed and the surgery worked. So...I know this is NOT about me but I can totally relate to the idea that healing and moving on and being back on track again can take time. I am almost 63, so I am younger than your mom; perhaps, she experiences even more challenges than I.
As far as her moving home -- and I am sorry if you have already mentioned this or addressed this in other posts with re: -- how about her considering a paid caretaker coming in her home to assist with ADLs and maybe also looking into the possibility of attending an adult day facility? It could help immensely. You and your sibs are ok to ask for help. Myself and my sibs have had assistance with our mom while still being there to assist and manage her affairs (she lives in memory care, a couple of her "kids" have POA for financial and medical and it is working out). She has the money to pay for the care, which she designated ahead of time before dementia took over.
Post stroke, she has dementia. She is currently living at her home with 24/7 caregiving. But, in about a year, I will need to sell her house and move her into a facility in order to pay for her care. Anytime I ask about what she wants to do next, she tells me she doesn’t want to think about it.
So, I’ve been visiting several memory care facilities and I’m going to pick the one I like best. When it comes time for my mom to move, I believe that it might not be easy, but I think it will be the the best I can do. Hopefully, she will adjust and be happy there and I plan to take her to visit the facility as well. But, I’m not fooling myself into thinking she’s going to freely choose to move into memory care. Why? Because she’s never really made big decisions for herself.
Good luck! I hope you find something that works.