Do I move Mom to assisted living now before we don't have a choice?

So much to learn, I've been recently diagnosed with Lewy bodies on top of a whole host of physical issues including being wheelchair bound, and I'm part of a DID/MPD community. I'm a carer for my BIL who has his own dementia. Widowed almost 9 yrs ago, no other living relatives and a handful of elderly friends spread far and wide. I have 10 hours of support time per week and try to care for myself and fur babies, + BIL. So that's who I am in a nutshell, now to give you my perspective on your issue.
3 years ago I had to move into my current 1 bed flat after 30+ years in my own 3 bed house. Frankly I hated it, I knew it was necessary as I couldn't access my home and had no hot water or much electricity for 3 years prev. I moved with bad grace but determined to make the best of things and I've tried to. I taught Brownies until 18 months ago and was active in the local community in various groups. Now with unexpected flare up of health issues I can barely leave my flat without assistance, tomorrow my little dog goes back to his breeder because I know I can not give him the life he needs. I love him to bits but he doesn't get enough exercise or interaction with others. It's breaking my heart but I need to be responsible enough to make this decision. That leaves me 4 cats aged almost 4 & 3 years old, 2 Chinchilla & a Syrian hamster almost 5 months old. At the moment I can still care for them and I do. However, I regularly forget my medication (thankfully it's mostly supplements and my pain patches my computer reminds me about every 3 days) I don't eat enough. Not interested/motivated to eat, cooking is almost impossible.
I would fight the idea of going into "assisted living" or similar, I don't want to lose my independence. But, and I would never write this if I knew anyone I know would read it, a part of me is ready to hand over the reins. I'm arguing because it's all I know, it's what's kept me going. But at heart I'm exhausted and to hand over and have someone else make the decisions would be great. I'd lose my fur babies and that would break my heart as it is with my dog ~ But I'm going to lose them some time.
I never had a loving family home/childhood and I guess what I'm looking for is that. A "parent" to care and keep me safe because I'm not sure how much longer I can keep me safe.
I'd "lose" most of what I have now, but in reality what it really means is less stuff to have to take care off. I don't do all the craft activities I used to love, though they are all here. I rarely go out and when I do I'm afraid and I want to be home. Then I'm so exhausted I just want to sleep.
Ok, I'm just recovering from a 3rd bout of Norovirus and I'm probably depressed from that and not being able to keep my meds down. That said, this is the truth of how I feel. If my Care agency rang tomorrow and talked about sheltered accommodation I'd say "NO, I'm only 59 I'm not ready for a granny annexe." I'm not sure though that I'd fight for long. I'm scared of the future whatever it brings, because whatever that is it's going to be out of my control and it's going to keep getting more and more out of my control as I lose more and more of me.
I hope this helps give another perspective on where your loved one might be.

Babalou: Thanks. She was diagnosed with mild cognitive impairment with short term memory loss last Nov. Apparently, if LA doesn't have a local contact (someone who can get to the house within 15 minutes of a call) and the LA wearer doesn't answer the call back (Mom was in the bathroom), they automatically call 911 for EMS. I'd already planned to be at her house for about a week, starting day after tomorrow. These visits always wear me out; I think I have her back on track, then a day or two after I leave, she'll push her LA button for a non-emergency. AARGH!

Caty, it sounds as though your mother has anxiety issues; this happened with my mom. It sounds as though the LA pendant, which I'm sure was added to the daytime CNAs to assure you all that she was safe at night is being misused. That's an indication that she needs a higher level of care.

Two things; I'd get her in for cognitive testing and a good geriatric psych exam, so that you can get a handle on what her needs are. I'd start looking into Independent and Assisted Living facilities, possibly near you or one of your siblings, if you have any. Having mom in a place where there was always staff around, where she could get to the doctor by herself, where there were activities, a variety of people to interact with....they were all a Godsend for her. Much less isolating than being home with a CNA. And I'm sure it would be much less expensive than $300 a day.

The idea of having her close to one of you comes from this; when mom ended up in the ER (falls, high BP and eventually a stroke) one of us had to get there. If she's close by to one of you, it makes it easier. Good luck.

When is it time to move Mom to AL, when she frequently calls Life Alert for non-emergency situations at night when she's alone. We don't want to cut off her LA service, but we and the neighbors are tired of calls in the middle of the night and ermergency vehiciles flashing lights and running engines, waking up the whole street. Should we just take away her alert pendant, put a hold on the service or cough up an extra $300 a day to extend here CNA care to 24/7?

I agree about finding the right level of care. Find out what she really needs daily. I wouldn't rely on what she says she can do. Dementia patients often say they can do lots of things, but in reality they cannot. A regular Assisted Living may not be enough hands on care, but a Nursing home may not be necessary, if she doesn't need skilled nursing care. I would look at Memory Care, which is a more secure Assisted Living with much more hands on care.

SoMuch - please, please get a realistic handle on what moms ability is. Yes, I know she has been living on her own but often so much of daily tasks is rote memory by default. Add to that, that our parents can "show-dog" when we visit. Family often fixates on the finances so AL always looks like the better decision. Keep in mind that Medicaid waivers for AL isn't always available BUT there will be a NH somewhere that takes Medicaid & will take her Medicaid pending from day 1.

If you can, visit both a AL and a NH that you like and be there for about 3 hours - to be there when an AM activity is done (10/10:30) and then go to lunch and then to the beginning of whatever is planned for after lunch. Will your mom fit in? AL are very much social hives with planned activities while a NH is not quite so much. Can mom do what the majority of the other residents are expected to & can do? I'd guess that she will not be at the ADL ( activities of daily life) level that most AL residents can & are expected to do but is more at the NH level.

If mom has been somewhat isolated in her home (I don't know if this was an actual mountain or not!), an AL could be just overwhelming. She may not be able to follow along the pattern of daily life at AL. They don't have to be all sorority social to live in IL, AL or NH. But if they are very antisocial, a NH will be more accepting of their personality.

Moving them is hard but moving them from their home to AL only to get a "we do just love, love, love your mom but she needs a higher level of care and this is your 30 day notice" a couple of months later is a panic & crisis situation both emotionally and financially.

I would look for ways to help your mom stay in her home as long as possible. Perhaps you can find some local, low cost in home care for a few hours per day/week and assist with medication reminders, meals, etc. In home care can be a much more cost effective alternative to a facility.

Check with your local Agency on Aging. There is likely assistance available such as Medicaid Waiver, VA, etc.

Moving to an assisted living facility can be a bit costly and the transition can be very traumatic. Your mom sounds like she has led a very independent life in which she has been in control. If you plan to move her to an assisted living facility, you will want to prepare her for the loss of control of the small things in life for example when she sleeps, eats, and who she associates and how she spends her time.

If you decide to move forward with assisted living I suggest you do your homework, there are a number of good facilities and some are not so good.

Good luck, and God bless.

As cwillie has said, you can't force anyone into a facility if they refuse to go. Until she's diagnosed to not be able to make her own decisions, she can decide for herself.
I'm facing the same problems with my husband. I'm taking a chance next month and putting him in a facility ho will do respite while I need to be away for a few days. If he refuses to stay I don't know what I'll do except give up my plans and bring him back home. Also, you'll need her to get a recent physical from her doctor as he will need to complete a health form before she can be admitted. Best to get some of that done asap. It's what I'm doing right now myself.

You said, " have found a "local" Assisted Living place that also has a memory care facility. They require 2 years of private pay before moving her onto Medicaid, which will wipe out her savings & require a few months from me but not to much." As someone who has a mom with advanced dementia, it only goes one way.. which is much worst than what your mom has now. She'll need care for everything ...for years. It sounds like financially you don't have much maneuverability and need to move quickly. Otherwise, you'll have to do it which will make it almost impossible for you to work. Then, where will you and she be? I'd move her as quickly as possible so she can make friends and adjust.

Even with POA you can't force someone to move against their will, you would need guardianship for that.
I see this as a moral dilemma between living a longer life in a facility where she would be unhappy vs probably dying much sooner where she is. There are days where I'm not sure insisting they eke out their days in a care facility is really the better choice.

I've find when trying to find a place for my husband that there are some (very few) facilities that will accept less than the 2 years of private pay. In fact, we have a couple facilities where I live that will take Medicaid residents straight into the home. My husband can pay for a few months and then will go to Mediciad and the facility said that is fine.

If I were you, I'd call the Area Agancy on Aging in your area and ask them for a list of facilities that either accept Mediciad or at least a shorter time to pay out of pocket.

Good luck to you, hope this will help.

This is right. Trying to keep a dementia patient happy can be exhausting and futile. They often are anxious, scared and paranoid. These feelings may intensify as the condition progresses. The independent life they describe is often illusory. They are often unhappy anywhere they live and regardless of the circumstances.

Somuch2learn, You cannot let your emotions and feelings get in the way when you are dealing with dementia patients. You have to be sure she is safe and safe from others. She will be mad at you when you move her to a home, but she will get over it. She will adapt and you will have piece of mind.

I know it's tough when the loved one is adamant and they seem sure they know what is best. I would keep in mind that she is not thinking clearly.

What I did, and I did it because I had no choice, was to look at the reality of the matter. Is she safe not being supervised and cared for around the clock? They are at risk not only from exploitation, but also from wandering, accidents, falls, etc.

One of the main reasons my cousin's doctor recommended assisted living was due to her inability to take her medications. The doctor told her that she would NOT let it go. I knew what that meant and that my cousin would have to agree to go or the doctor would report it.

I convinced her to go by saying that she was going in for rehab, physical therapy, medication administration, nutrition, blood sugar monitoring, etc. AND that she would return home when the doctor saw that she was better. Of course, she soon forgot all about that. She is now in Memory Care and has no memory of any of that. (Progression of the dementia caused me to have to move her to Memory Care. She also began wandering and became double incontinent in a few months.) That's why I say have that extra support with Memory Care.

Have you visited the Memory Care unit you refer to? I would do that and ask questions, so that you can understand why they are set up the way they are.

sandwich42plus: I agree. I don't care a fig about that. She never really had any money, she should spend whatever she has however she wants to. I am just really struggling with whats best for her. Her dementia is noticable now, no hiding it. I just don't know how to proceed.

I have Medical POA & Durable POA: I can force her to move. What IS quality of Life? How do I know what's best for her?

About costs & money:

Yes, their funds will be used up by old age care and when they run out, there's a Medicaid application process. Running out may mean down to their last $2,00-$3,000 in cash/checking. It varies by state.

A hard reality of this time in history is that the idea of an inheritance is something for the very wealthy. Unless your parent arranged their finances 5+ years in advance of a Medicaid application and locked it all up in annuities or irrevocable trusts, it's going to be used to pay some or all of the room/board/Rx costs.

It's their money anyway, so it should be used to on their care.

Quite frankly, I'll be content if there's nothing left at the end. I'm fine with not having to go through any more legal processes and pay attorneys & death taxes any more than I already have!

Sounds like she is past assisted living. She needs a much higher level of care.

Your #1 concern is her safety, not where you would be more comfortable if you were her. This causes a lot of people a lot of grief. It's very simple. You are obligated to put her in a place where she is safe from herself and the world, where her changing care needs can be accommodated, and you won't find yourself having to relocate her with no warning because the facility can't handle it.

What mom wants and what mom needs may be two different things. There comes a time in our lives where we have to do the responsible thing even if it's not what mom wants. Mom can't make good decisions anymore, so it's our responsibility to make sure good decisions happen on their behalf. We don't let children eat candy for supper or stay up all night, without question. A lot of folks have trouble accepting that the time for their parents to be in charge is over, and it's on their shoulders now.

Safety First. Always.

I have found a "local" Assisted Living place that also has a memory care facility. They require 2 years of private pay before moving her onto Medicaid, which will wipe out her savings & require a few months from me but not to much. I seem to be stuck on whether or not it is more important to let her stay where she is comfortable or to move her where she will get help with medications & meals. She is adamantly and completely opposed to moving.

I would be concerned, because if she isn't taking her meds on time, there is also the chance that one day she may decide to take all of them at once. Once you are out of the early stages, not having constant supervision is a risk, IMO. I'd be concerned with more than just the medication issue too. Forgetting to eat is also concerning.

Does she have her Durable Power of Attorney and Healthcare POA signed? I'd make sure that I had those in hand.

I think I might determine two things: What are her current needs and anticipated needs for the future AND what are her financial resources.

Does the state she resides in assist with the cost of Assisted Living and/or Memory Care for those who are deemed in need? Some states do and if she is deemed to need daily assistance by her doctor, she may qualify if she meets their financial requirements.

I would determine if she does qualify and then locate places that may be a good fit for her, in light of what the assessment recommends.

I would be wary of moving to a place that is not strongly supportive of dementia patients. Some patients may be okay with reminders for daily care, but often with dementia the resident needs someone to bathe, dress, comb hair, cut their food and even hand feed them. Memory Care offers that kind of support, so I would really look into that type of facility.

I think it all depends on the cost of Assisted Living in your area. If you can, find how much net worth your Mom has, and if she can afford $2k to $5k per month for assisted living. Then try to estimate how many more years does she have? And if the assisted living facility will take a Medicaid waiver [depends on the facility and if the State offers such a program to help with the payment].

If the money situation looks good, then try to get Mom to move as soon as she can.... that way she would still be able to make new friends at the Assisted Living, learn her way around the building, and learn who is the Staff.

If you wait until she isn't capable to take care of herself at all, instead of Assisted Living she might need a higher level of care such as nursing home.