Thanks for replies. My mom’s preference is to stay at home so I hope we can make that work. One of my concerns of an assisted situation is response time. My mom gets frustrated when she needs help in rehab and it takes awhile for someone to come help her. She fell once at the rehab when she felt the nurse or aide was taking too long.
Assisted living is still working out for us. It makes my mother feel more independent I think. Since her colostomy we have felt better about services. They don’t provide toilet paper with all that money we pay!
We went to the skin doc today to have some skin growths and probably cancer taken off. My mother then asked the skin doc if he could take her colostomy stoma off too. She patter the stoma and hernia, which is a big bulge under her skirt, and said “Can you take this big thing off too?”
Every doc gets this question now.
It’s getting colder so I think she knows that summer isn’t coming 
@compmom fingers crossed AL continues to work out well. Don’t know whether to laugh or cry about the toilet paper.
We had a family training meeting at rehab hospital yesterday. Met the PT, OT, and care coordinator. They have factored in my mother’s pain level and confidence and are releasing her Tuesday rather than today. OT is coming to mother’s apartment for a home evaluation Monday morning; I’m picking my mother up and taking her over for that.
She’s improving, and more important, she’s starting to self-define as improving.
My Dad has pretty severe dementia and is resistant to almost everything (showering, dressing, etc…). He has been in Memory Care for 3 years. They are pretty good with him, but he will scream when doing they do anything with him. We are lucky that the doctor, nurses, physical therapists, etc… go to see him where he lives. He has a very ugly growth coming out of his elbow. He picks at it, and will tear the bandage off if they put one on. The doctor is recommending we take him to a dermatologist. I just can’t see how this will work, but guess we are going to have to figure it out.
@HouseChatte, that is wonderful news, especially that she is self-defining as improving. We have had such a good experience with home PT and OT and it applies to their actual environment rather than the artificial one in the rehab, which is motivating. Hoping for more progress!
@tx5athome My mother also takes bandages off. In fact, two days ago she heard all the complicated instructions for wound care, and the next day when I went to change everything, she had taken it all off and was sitting happily with the wound pressing on her dirty footrest.
It is useful I suppose, unless they are on hospice, to find out what the growth is. My mother’s is probably squamous cell and grew rather fast.
But it coud also be argued that since he gets agitated when anyone does anything, it is better to leave it alone.
My mother picks and one of the growths was near her colostomy so infection risk was great. Then again, she likes doctors tending to her. The novocaine made it painless. ne tip: next time we will avoid the epinephrine that is in with the novocaine. It makes my mother woozy but it can also speed up heart rate and maybe contribute to effects of agitation-? They can do novocaine without.
Can they sedate him for this?
I think AL versus home is greatly a personality driven decision. My FIL was very social, he would have done wonderfully in AL if he had not waited too long to go, but as he was virtually forced there, it was a rough adjustment and he was too far along, too weak, it just exhausted him and he had a few decent (ish) months, with a litany of complaints every single day. But had he moved when he was more himself, he would have loved it. MIL should have been allowed to die in her own home, it would have been best for her, but he was uncooperative. I think it’s a very personal choice.
The epi combined with the lidocaine constricts blood flow, decreases local bleeding and the provider is able to use less lidocaine and the epi slows down the absorption. Let the provider know your mom’s reaction and discuss options.
OT staff going over to my mother’s apartment for home evaluation tomorrow (Monday) morning. They already made some recommendations ahead of time, so I’ve put in a hand-held shower and a tub transfer bench. Everything else my mother or I could think of is done or there – the building is 62-plus or disabled, so excellent grab bars, pull cords in bathroom and bedroom for summoning help, elevator access. We’re looking forward to whatever advice they can offer.
Tomorrow after the home visit I’m going to build her a few meals and freeze them for her to reheat easily.
One thing we were wondering about was some sort of lifeline alarm thing. Anyone know of a good option that alerts without the wearer having to do anything? My mom’s pretty intimidated by any tech, and first reaction in a crisis is understandably confusion. Suggestions, thoughts, please?
Tomorrow I leave for ten glorious days of respite from full time caregiving. I need to sleep but am too excited!
Take your breaks, people! They are critical to getting through the long journey.
Would love some perspective. My mom is 98. I have POA and Health Care Proxy. For past year I’ve had 24/7 Care for my mom in order for her to safely stay in her home. She has no short term memory, and long term is starting to go, but not always. Her health is great. She has terrible balance but was a lifelong athlete so she’s in decent shape physically. Her attitude is appreciative, compliant, and overall is a happy. She was not this way but around 92 I think she forgot how to be grouchy & passive aggressive.
The problem? How do I know when it’s time to move her into AL with memory care? She has enough $ to keep caregivers going 24/7 till she’s 100. But after that I’ll have to sell the house. She has an LTC policy that will only cover $133 per day if she enters a nursing home. It will not pay for at home care of any type. The other big mistake I’m probably making (go ahead & say it, I know it’s wrong) is paying all caregivers under the table. They all agreed it’s how they’ve done it, and I’m saving $10 per hour by not using an agency. The caregivers make $20 per hour. Once the $ is gone I’ll have no choice but to sell her house and put her in a AL memory care. Do I roll the dice and keep this going till I simply have no other choice? She LOVES life living in her home. The caregivers are amazing and she’s super happy. It’s her $ so that’s how I look at it. Btw, I tried reasoning with her @ AL memory care and she said she’s never ever going. I told her I couldn’t guarantee it and she said well I’m never going. I mean they all say that and it was a pointless conversation to have. What did I expect her to say? The way I look at it, it’s her $. My 3 siblings come 1 weekend a month to stay the weekend to help offset the cost. My siblings, for various reasons are getting burnt out, and I can understand but have decided that if they can’t keep it up, I’ll just up the caregivers. I used to do weekends too, covering not just mine, but some of my siblings too, but in addition to running her household, finances, & paying caregivers I stepped out of doing weekends. I still pull shifts when needed, or stay overnight. If she had no idea where she was I’d do it tomorrow but she’s simply not at that place yet. Wondering if anyone has suggestions
Full mom, I can so relate to your situation. I wish I had some better advice for you. Your mom sounds just like my mom in her mental and physical health. My mom is 99 and living full time with us for almost two years and we have a live in caretaker for her six days a week. She used to be in assisted living but they wanted to put her in memory care which would’ve wiped out her savings in a few months. So we brought her to our home. Her dementia is getting worse, the endless repetition is driving me crazy. Our home is no longer our home with walkers, wheelchairs, potty chairs and the inevitable bladder and bowel accidents. We used to love to entertain friends and had so much pride in our house but no longer. And weekends we are captives in our house. It’s putting a strain on our marriage, although my husband does try to be supportive. I guess I don’t have any answers but it feels good to vent and know you’re not alone.
@Lassie3 wow wow wow. You are so kind to take the time to reply. Hats off to you & your husband for taking your mom in. Was there ever the idea that if your moms money ran out that Medicaid would step in? And she could have stayed, even if not there, somewhere? I can understand that you did the right thing. And I can so understand the litany of issues you mention. Well at some point you may have find a local social worker to help you see if you can transition her to a AL with memory care. Don’t lose you marriage or health over it. She wouldn’t want that. But goodness do I know how tough your situation is. God bless you
My mother lived with us for almost ten years after Dad died, dementia getting noticeable 4 years ago and the last year and a half was hell. I am glad it worked out that she was able to live and die in our (mine & her, we genuinely made the effort to consider it shared) but she was only 93. I could not have gone much longer than another six months after she died in terms of having a life and impeding our marriage. However, managing all the details and dealing with an AL/MC/SNF is no treat, you still get the calls and have to visit etc.
One of my biggest struggles was simply wishing I knew how long she would live, the level of care and interaction I could maintain really depending on the time left, as I could not sustain some things for very long. How do you even predict when they are 98/99!
I will say that my MIL should have been allowed to die in her home, that would have been the best for her, but FIL was uncooperative with the needs of making that a reality so we pulled the trump card and made them move to AL/B&C. I suppose what I am saying is that if she can afford it, and she can stay in her place, great. I mean, why not? And personally, I would hope she died before she had to move. But I don’t know your details.
If she’s happy in her home, it’s wonderful that she can afford to stay there.
I have toyed with looking at Medicaid nursing homes but I fear it would be a death sentence for mom. Any change sets her back dramatically. I don’t know if I could knowingly confuse her remaining years. And she couldn’t have better care now with her caregiver who spends every waking hour granting her every wish. She actually can’t wait for her to come back on her days off because I’m not as attentive as her!
Thanks for listening, I’ve wanted to post on this thread for many months. I know many of you have had worse situations so sometimes I thought what I’m dealing with is not a big deal, somemom, for instance, or those with parents with so many medical problems, or those that have no respite. I guess if there’s a positive, Friday nights are our standing date nights because the caregiver is still here and we get out of the house!
Fullmom I also pay our caregiver under the table. At this rate moms got about 14 months left before we’ll have to support her. There is nothing physically wrong with mom besides arthritic knees.
@Lassie3 and @fullmom This thread is THE place to vent as well as get ideas. It helps to think you are never alone and someone else might have experience to help. Post sooner!
I echo, you never know how long anyone will last, but they always last longer than even they want when dementia hits strongly. There really aren’t PERFECT answers, you do the best you can and balance your life with theirs to some extent. PLEASE try to keep some weight on your side, there are too many times everyone’s cup is full except ours. My mom has been dead just over 2 years, I am still settling her estate and the damage to my marriage is still continuing. And I never moved Mom within 400 miles of me!
If you are worried about spending every dime and then not having any alternative, start by talking to the senior services in your area. Talk to social security if you haven’t already. Doing it now while not in crisis is very helpful.
And know you are not alone.
In some areas, if you’re an AL resident and funds run out, they keep you, take Medicaid payments. Aiui, that’s different than running out, then trying to find a residence.
Worth asking, in your area.
We’re in the same situation. We found a 24 caregiver for my 90 yr old mom. She gets released from skilled nursing this week. She fell and broke 3 ribs and went to ER and SN. She wants to go back home and after this last fall it’s evident that she can no longer be by herself. Caregiver we found also is also private pay and not with an agency. Unfortunately, caregiver is only M-F so weekends are on us. Some of siblings travel for work, live out of town, or have kids so my other siblings are leaning toward assisted living.
The decision is a hard one where we try to do the best for our parents but still need to maintain some sanity in our own lives.
My dad is finally down to 12 hours a day of receiving care rather than 24. I think he likes having some help around the house since Mom can’t do a lot. They should be able to move into a retirement facility pretty soon. Dad is back to consulting and traveling! He’s finally bounced back. His heart surgery was just over six months ago - what an ordeal.