Please be aware that you may not be able to give the level of care professionals can. You may not even have reference to what’s a critical sign versus just something that will pass. In itself, that’s a heavy burden. It’s a wrenching decision that depends on each case. My friend had her mom in an AL place, but paid outside assistants to be there 9am-8pm, handle hygeine and all the rest. My friend went to feed her mom breakfast and check in. She’d be back after work. But she didn’t try to do it all. Her mom wasn’t mobile or social, at that point.
@compmom, I found a support group through the Alzheimer’s Society here. Although the rest of the group was very different from me, it was a great comfort to meet with a group. I would have continued with it except that I found an amazing therapist and the times conflicted.
My mother is in assisted living but as I anticipated, services are limited. However, I work well with nurses, director and her own doctor. Without going into detail, I have extensive medical experience and end up diplomatically steering the professionals, frankly. But I always consult them.
That is a different issue from workload, which is only recently increasing- dramatically. Her vascular dementia is taking a rapid dive.
So am in the process of organizing things legally and financially so that things can move forward in the best way possible for everyone.
This follows a long string of health disasters for kids, ex, me about which few therapists have experience. I am seeking info from those in the field and peers. I did do hospice work briefly so am not entirely without a clue 
I had a patient who had been in bed for 12 years but every time I went in there she had an interview at Stop and Shop to get to. She also asked me to call the fire department to get her out of the nursing home. My mother is not there at all. I have been told- by professionals, yes- that things get easier as her dementia gets worse. We’ll see!!
I wish this was true for my dad…
I think it depends on the kind of dementia. My mother’s is vascular.They were trying to say that the resistance and anger that results from kind of being in and out of dementia, die down and there is more child like compliance. That is proving true with my mother but I have watched another relative become agitated and violent with Alzheimers.
My mother’s heart seems to be part of the problem so fatigue is also making her easier. I hate to say it.
Compmom, the anger and defiance do die down, and they become more childlike. Literally childlike, think 2-3 year old needs and wants. And demands. I kept my mother at home (my story is in this thread) until she fell in mid-january and broke her upper arm. I skipped the assisted living and went straight to memory care, one of the best in the area because my step-daughter is on staff there. They loved and doted on my mother, but that didn’t stop the blood clots from forming and traveling to her lungs or the massive bleed out when the blood thinners worked too well.
At home, she would start wanting to go to bed at 5:30 in the afternoon, and demand it every thirty minutes. She would want to watch a tv program, I would get the channel for her, she would either change it or turn it off, then come tell me it was broken. She would try to change channels with her phone and call my brother with the tv remote. I have a business to run; I had somebody with her 9-4 five days a week, and those were the hours I could be away from home. If I needed or wanted to do something else, I had her devoted caregiver who would stay over or come back and stay, even to the point of allowing me to go out of town for a few days. Is that something you want to contemplate taking on, with a family at home and your own health issues? I am a widow with no children at home, and my daughter and her family across the street to come help when my mother fell. Every. single. person. who I tell that my mother passed away a couple of weeks ago says “maybe now you can do a little bit of something for yourself”. I was truly tied to her, and didn’t know how to untie the knots. I felt so completely guilty when I had to put her in memory care, but at first it was just until her broken arm healed. It soon became obvious that I couldn’t bring her home and care for her.
That isn’t even taking into account all the falls. It was a miracle that she didn’t break a bone until that last fall; she was over 97 years old. And I would have to call for help to get her up.
And why would you not be able to hang out with your mother in memory care? My mother had a large room (“apartment”) and I could take her out of the memory care area, into the assisted living part where there were several seating areas. Plus there were sitting areas in the memory care unit. I could take her into the main dining room for a meal (and their meals were very good; there was an extensive menu) or into another little area where there was coffee, tea, lemonade, water and snacks. There was a beautiful outdoor walking area with flower gardens and a gazebo, it was completely secure and the residents who were mobile could go out and sit on benches. The only difference with memory care was that the staff/resident ratio was higher and they had organized activities going on part of the day. When there was live entertainment in the assisted living dining room, the memory care residents were taken in to enjoy it if they wanted to (and that happened at least once a week).
And, of course, it was secured. You had to punch in a code to get into and out of the area, for obvious reasons.
@compmom, you’re probably aware of these things already, but I’ll say them just in case. People with dementia often have problems sleeping, and it can be very hard on the caregiver to continue functioning well if the caregiver is woken repeatedly during the night. Toileting often becomes an issue: can you or will you be able to take your mother to the bathroom as often as necessary or change her diapers if she becomes incontinent? And then there is the tedium of being a caregiver to someone with dementia. My former mother-in-law hasn’t been able to engage in any activities or communicate effectively orally in several years and hasn’t walked for the past two years or so but she needs 24/7 supervision. Giving this care is very wearing on my ex and his dad.
Compmom, I own a fairly large construction company but I kept My mother at home for the week between her fall and her entry into memory care.I was waked every two hours, on the dot, because my mother was bored and wanted to do something else. I am blessed with a group of people who work for me and who have strong feelings of respecting caring for me. They kept things going while I had to take care of my mother.
You really have a lot of decisions to make; I hope you study them hard as you make them. God Bless you.
@compmom My dad is in Memory Care. I visit with him in his room, in the dining area and out on the patio. Or I take him out. What is nice is they have an activities director. She takes them on van rides, for walks, play games, etc… and even if my dad isn’t actually participating, watching keeps him occupied. There is a doctor who comes to the facility (both the AL and MC sides), they contract with a pharmacy that delivers medications (and they bill me). Prior to Memory Care my dad would call me in the middle of the night thinking it was daytime. When he initially started to struggle I thought I would move him in with me. He ended up being hospitalized and then transferred to a psych hospital. The psychiatrist and social worker both convinced me that there was no way we could meet his needs at my house. Your mileage may vary, but in hindsight, for me, there is no way I could have handled my Dads defiance, hygiene, toileting isuues, bathing issues, etc…
I feel as if I keep bouncing in and out of this forum (as well as the internet at large) but I thought I’d provide an update. Dad has now been at the Veteran’s Home an hour away for about a month. He is doing very well but tears up every time we visit. I went to his initial care team meeting and asked them straight up if he was appropriate for the memory care unit since he is so much more aware than the majority of the residents. They said that he was on the upper end of the scale but it was their opinion that moving to the larger general unit would be confusing for him after he had settled in there already, and that he’d have to move back relatively soon. After discussion the results of their evaluations, I agreed with them.
My mom is a much larger issue. We settled her in a nursing home about 30 minutes away which has skilled care. However, it turned out their version of a diabetic diet was simply withholding desserts. Even though she substituted wherever she could, within two weeks her blood sugars were over 300, her already compromised vision was worse, she was bloated and short of breath, and screaming at me that she wanted to go home and die. We took her to an E.R. to ensure she wasn’t in imminent danger, then brought her home a week ago to get her diabetes under control. Although her kidney function is greatly compromised, she’s doing much, much better now.
But what do I do with her? Understandably, she does NOT want to be put into another home at this point. I could quit my job and become her full-time caretaker, but I’m not sure I can face that. My DH, kids and I spent 15 years sharing a home with my parents and we’ve been so happy to be on our own for the last four years. My older DD is home with us after bailing out of college due to depression, anxiety, and other issues, and it’s probably not fair to her to have her grandmother trying to micromanage her again. But Mom is still a sharp cookie – she just has a lot of medical issues to manage – and knows how much better she’s feeling now. I simply don’t know what’s good for her and fair to us. Short-term, I’ve cut my hours at work and my MIL will be coming to stay with her two days a week, but work was only willing to do that for a month.
Sorry this failed to post last night: My mother fell last night at assisted living and bled due tio Coumadin. When I took her for a haircut yesterday she was gasping for breath. Whatever I do it won’t be for long. Her mind is declining because her heart function is worse . My kids are grown and gone and I am retired. I’ll figure out memory care decision. Thanks all. I’m all set.
Nerdmom88 I have a 20 something with type 1 diabetes, who had a serious traumatic brain injury. In the iCU her blood sugars ranged from 40 to 450. In rehab they could not manage it at all and asked me to do it. I spent 24/7 with her for 9 months because professionals have no idea how to keep her safe. I completely understand your dilemma.
Good luck @compmom with this difficult decision. I can’t manage my dad who likely has both Alzheimer’s and vascular dementia. He wants to be “on the go” but needs spotting as he is unsteady, incontinent, and needs to be fed. The caregivers do a great job getting him into the shower. But, he is 82 and physically well in other ways and it is the “long-haul.” I think I could manage my mom who seems to have just amnesic dementia (oriented to person, appropriate responses, but has no idea of place and time). She manages ADLs but needs help with things like differentiating between soap and toothpaste. I would encourage you to rethink her meds. Does she really “need” to be on coumadin? Is it worth the risks for a questionable benefit? It certainly isn’t a quality of life medication. Relative risks, the chance of stroke on or off coumadin statistics may be alarming (and confusing for those not familiar with bio statistics), but the actual risk is not that high for someone not expected to live long.
@nerdmom this is certainly a difficult situation! I’m wondering though, with your mom’s sharp mental status, if she can live in an apartment nearby with a part-time caregiver? Even very medically compromised folks can often live alone with some assistance. I think with your daughter’s situation, having her grandmother there may not be a good thing if she she is judgmental and likes to micromanage. But, you know the dynamics of your family best.
As I wrote before, my mother had a stroke a few years back when they took her off Coumadin for 5 days. She absolutely cannot come off it. Her afib (the kind with heart valve issues) is continuous and will absolutely produce clots.
I certainly have refused it for myself. But every time a doc wants to take her off it, for a procedure, or to drain a knee filled with blood after a fall, I remind them of how her stroke happened and they are then more than convinced to keep her on, or cover her with heparin or something if she does ever come off.
It is clear my mother’s needs are not being met where she is, even though it is a wonderful assisted living. I am just getting ready for the next step. I am not at all naïve about what living with her entails but thanks to all for the details you have dealt with. Right now I don’t have a real home to bring her to. But for the $10k a month the memory unit would cost she could get a pretty nice apartment or live in a hotel with me.
Good luck to all. Signing off.
Sorry @compmom, I had forgotten about the cause of her last stroke being off coumadin for 5 days.
Everyone who is on Coumadin should be very careful. About one year ago, H was taken off to have a dental procedure. When he went back on, he got an idiosyncratic reaction and wound up in the hospital for a week with a DVT. From now on, he has to have Luvenox/Heparin if he has to go off the meds for even one day.
@compmom - Is your mom eligible for any government aid? My MIL is 93 and is in her own home. Last month, she was finally upgraded to 24/7 live in care paid for by Medicaid. Her issues are orthopedic in nature so she needs round the clock assistance in toileting, preparing food, cleaning, laundry, etc. Her mind is as on target as it ever has been. If your mom is eligible for such services, you might be able to keep her in your home or in an apt nearby. If you get live-in, there has to be a place for them to rest. Ironically, 5 years ago, I moved my aunt to AL because it was cheaper than the apartment she had with 24 hour care. She died before she could be moved to memory, which would have been a couple hundred more than the apartment, etc. had been. Good luck with your decision and your mom.
@NerdMom88 ~ so sorry you’re going through all this.
Good luck, @compmom. Please take time to take care of yourself, whatever you end up doing for your mom.
My dad died of the effects of a stroke, which we think might have been caused by being taken off coumadin for a short surgical procedure. He felt so good right after the surgery, and then two days later, had the stroke.
@GTalum – although Mom’s mind is good, she can’t be alone for long because her blood sugar crashes without warning. (We ended up in the ER three weeks ago because she crashed, fell, and hit her head on a tile floor.) Also, she can’t see well enough to cook for herself or do her own meds and only walks from her recliner to the kitchen and bathroom. Good mind in a fragile body…
Nermom is she on insulin? What kind? My daughter wears two devices, a pump and a continuous glucose monitor both inserted under her skin every few days. The tubing is a pain. The CGM sends reading to her phone and mine. Last night I helped her sleep by getting up every hour for awhile to check and make sure she was safe, because she crashed three times in two hours. Maybe you could look into using these devices.