24/7 In Home Care or Memory Care Facility
Comments
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Your Mom gave you the medical POA because she trusted you to make this decision, and may not have believed your sister would make the right decision. When you say you and your sister are joint financial POAs, what exactly do you mean? Can you each make decisions independently and reverse the others decisions? Do you each have to be in agreement before a decision can be made? Or is one of you primary and the other is only POA if the primary is unavailable?
I think you should listen to the doctors and place your mom where she can get 24/7 care by a full staff. I do not think you should move her in with you as you will only be forced to move her again later ( probably sooner). I do not think you should move in with your sister. Either extend your lease again with your landlord or find a new place for just you. It sounds like you and your sister are not getting along 24/7 right now.
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We are joint attorneys in fact for my mom in regards to all financial and legal matters (we both must sign checks written on behalf of my mom). My mom designated me her surrogate for healthcare decisions. My sister does not live with my mom FT just mostly nights since this happened. If I moved in she wouldn’t be there except to visit mom. At least that was the plan before. I know my mom. Would receive the care she needs in memory care but I believe I will be going against at least two of my siblings. They will say they will take care of her and I don’t feel like she’s getting the best care in that situation. She isn’t now. I’d love to keep her in her home but getting the help is what’s difficult. I work full time from home so that helps but I can’t be up all day/night caring for her either. This is all so hard. I look in my moms eyes and I know she remembers how close we always have been. Thank you.0
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Sign a new lease with your landlord.
Do not move in with your mother.
Do not agree to "take turns" to sit with her. Tell your sister you are against her staying in anyone's home, you are not going to be moving in with her and placement is the only option, which you will enthusiastically support and visit often.
Keep repeating it. Nobody can force you to care for her. Nobody can force you to move in.
You have a life that must continue and the plans for your mother need to allow your life to continue as normally as possible, which does not include her being kept in a 1-bed nursing home with you taking shifts.
As far as "assisted living" I am sure your mother is beyond that level of care anyway.0 -
This is a real tough call, I'm so sorry you have to go through this. I am going through a similar situation, although my timeline is not as tight. Here are some things I constantly think about and you should consider moving forward:
1. meals & shopping. This is taken care of by a facility, and can often meet specific nutritional needs. My mother is at home with 24hr caregiving, and we currently use mom's meals for most of her meals, with supplemental instacart deliveries of milk, eggs and extra fruit/snacks. This is because she does not qualify for meals on wheels, and the caregivers can only cook "light meals" ; it is tailored to her heart healthy diet, and while tasty it does get repetitive. Even with auto orders it gets overwhelming sometimes making sure enough food is in the house as she snacks a lot, and the caregivers are not very comfortable stopping her from snacking
2. medications. Caregivers can only remind people to take their medication, a nurse is required to administer it if they need help, and to set up the trays if you are not available. Again, a facility handles all of this, and it is a burden ensuring she takes the medication and constantly have meds change and filling the trays, but right now our family has chosen to take this on
3, caregiver call-outs. You would not believe how often someone calls out. Even with an agency it can be difficult for the agency in this environment to find a last minute replacement, and the agency is double the cost of a private hire. However, facilities are also facing their own shortages right now, it's just a hard time in the industry
4. covid exposure. much higher in a facility, and you can ensure that the people who take care of your mother are vaccinated
5. transportation/doctors visits ext. Many facilities have primary care on site, and will arrange transport to medical appointments but you still need to be (or call into) the off site doctors visits.
6. household maintenance (taxes, repairs etc) this adds up time wise fast. my parents condo went into disrepair before we knew something was seriously wrong, and it is taking forever to put right on top of everything else
7. If opting for stay at home care, strongly consider an adult day program if you have one nearby. Because of covid it has taken a year for me to get off the waitlist but it is a life saver! And a considerable cost savings over true 24 hour care.
Good luck! She is lucky to have such a thoughtful child looking out for her best interests.
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Read epblionis above multiple times
Then re-read what you wrote:
== I don’t feel like she’s getting the best care in that situation. She isn’t now. I’d love to keep her in her home but getting the help is what’s difficult. I work full time from home so that helps but I can’t be up all day/night caring for her either. ==
If your siblings were capable of caring for her 24/7 they would already be doing so. They will never make the decision to place her until and unless they have to deal with the consequences of not placing her. If you move in, and are subject to your sister’s whims on placing her, all that will happen is that you will become the 24/7 trapped caregiver. The other 4 will live their lives … if you don’t Believe me, go read the profiles of the 24/7 caregivers here, their siblings go enjoy life and they are the only ones dealing with their loved one.
Sit back. Tell your family you need to place her and that you WILL NOT be moving in. Tell your sister that she is on her own to find caregivers since she refuses to place her. This is like an intervention. Your family will not change their minds until you hold your bottom line.
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Hello! I agree with what the others have said and want to add one thing. I have a hard time with the assumption that staying in one's home is always best. For my mother this was definitely not the case. In addition to the many valid issues already listed, living in MC with other people, full time care, and structure is better than barely getting by at home. I knew that there was no way I could care for my mom in our home and that everyone's mental health would be worse if I tried (me, my mom, my husband, our kid). Your mom is only going to get worse and it will only be more difficult and more stressful to keep her barely hanging in at home. MC is the right choice, which you already know. Start looking for a place and getting on waitlists.0
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My moms been on 24/7 care for over two years. We moved my mom in the house right behind mine. Although technically a I don’t live with her, I stay over nights and only have 35 hrs of caregiver help. This situation has been going on for 1.5 yrs. We’ve had hospice on board since February.
My brother and I are sharing in her needs although he lives in a different state. He’s primary POA and I’m secondary but we both know that I’m basically primary concerning health needs. I took on this role voluntarily and do not hold a grudge that he isn’t involved with her day to day care. He admitted he couldn’t do it, I can and also became a licensed CNA to prepare for this plan. He does take care of all her finances, thank goodness. He leaves it up to me on what I can handle and when/if we place her in a facility. He’s four years older than I am and I’m glad that I can help him live his life. God willing, I’ll also have my life again when mom dies from this stupid disease.
In saying this, I’m now in a place where we need a higher level of care. She’s been declining slowly yet now it’s different. Two of the caregivers that I work with can no longer transfer her. I’m afraid they might get hurt because of the physicality of it. She doesn’t understand cues as well, like move your leg, step this way, turn your body and she stands or sits as if someone will move for her. My back feels it. She’s clueless of course. The daycare she goes to a couple times a week is about to kick her out because when they need “two person assists” she no longer qualifies to be there.
My plan A is to keep mom here until she dies. To do that I have to rethink. A change in caregivers is first on the list yet is so daunting. Increasing hospice CNA visits and probably a hospital bed in the living room is in the very near future. It’s all doable but difficult. I need what’s left of my sanity so I must have help. If we have to hire 24/7 help here or place her we will.
I guess what my long winded point is is that it’s so hard to keep a LO at home for the duration. Moving your ma to a facility later may be worse. You’ve all got to get on the same page. What your LO is now is not what she will be. Also forcing people to give care when they aren’t on board with it is bad for your mom. Your sister should not be expecting everyone to play a part in hands-on care. You all need to be very honest with yourselves and each other on what each of your boundaries are and what you can and will do.
Please know I’m sending peaceful thoughts to you and yours.
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Gosh, yes! I can only agree with everyone else. My mom lived with me while we waited for the vax to be released. She was probably stage 4 - early 5, no short term memory to speak of, and I found it difficult to focus and be able to work. I cannot imagine how you would be able to work from home. (And that would be the least of your worries). You are HCPOA, and you are right to balk at the assumption that your mom will be fine as long as you pick up the brunt of the work. Let the ones who think Mom will be fine as long as someone’s home with her put their money where their mouth is and take her in. As the past primary caregiver you know what you know, right? Trust yourself.0
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"Can barely get to the bathroom on time and must have gone 10 times while I was there" Have you considered a UTI or med side effect?
From what you have said, I gather that while you are trying to put in place 24 hour care, right now your mother is still alone part of the day. This is concerning as it is easy to fall trying to get to the bathroom in a hurry and she might be alone on the floor again. I am going to go somewhat against the trend and say go for trying to get family members to commit to 24 hour coverage as a short term solution. This will do several things-Your mother will be safer. Your siblings will be able to determine if this is something they can do. It will buy you time to look for private care and to research and visit facilities. Tell your siblings there is a time limit on family care, say two weeks, and then everyone must reevaluate. Also, it is a good idea to find a neutral third party to mediate meetings. You could try to find a geriatric care manager to help you.
Good luck
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Jolynn,
I am so sorry you are going through this. I am a caretaker myself.
I am going to give you the opposite opinion of what most will say on here.
I am of the opinion that if you put your mom in a facility she will decline.
This is what a doctor told me about my mom. [The neurologist who we later saw said that patients do better at home]. The advice from the doctor was that if your mom has a been a headstrong and tough and independent lady all her life, to suddenly be put in a facility where her meals, sleep, recreation, and everything else is controlled -by someone else- it will make her suffer. Loss of appetite, attempts to leave, etc. are all because no sane person wants to stay in a place they hate. This is my opinion. And even though people with dementia still aren't all there, there's enough "there" to make people want to get the he/ck out. Why else would some of them climb out of windows just to leave. It's not always the meds making them act crazy. Often it's the facilities themselves. Also if something were to happen to mom there, good luck getting any legal redress from those places. Be prepared for a lengthy court battle as they usually lawyer up pretty quick. And from reading posts on here, it's not like a facility is the end all be it all. It brings a different set of stressors. Such as if mom has a medical emergency they may call you or your sister to decide what you'd like done. Or if mom starts calling you every hour, on the hour, to want to leave. What are you going to do then? Who will go see mom to calm her down? While I understand no one wants to accept that their life is going to be turned around, the truth is our lives have been turned around, period. While we live in a culture where personal inconvenience is to be avoided at all costs, the reality is this disease doesn't care. And usually in facilities you'll find loved ones going down a lot quicker than at home.
Something about removing the elderly from their surroundings seems to accelerate the deterioration process. I myself didn't listen to anyone, after I first did listen to everyone, and my mom only got worse. It's been 3 years later and I'm still taking care of my mom. I have an HHA with me but my mom is actually better than when I first got her home and I have the medical records to prove it. Her new doctor is amazed how well she is doing. It was Not Easy but I found that the multiple drugs they had her on only made her crazier and some things were just common sense. Fresh air, lots of sun, outings to the park, -edible food- are things I provide for my mom and that's why she's so much better than she would be in a facility. Again it Not Easy nor was it easy to figure out but I've done it. We tried a facility for two weeks after hospitalization 3 years ago. Never again God willing. It's still hard, I still have hard days but I know my mom would go downhill pretty quick in one of those places. I looked at the expensive to the cheap in my area and wasn't impressed with any.
Now, no one can predict the future and I do not know your mom's medical condition. My point is that you can't listen to all those naysayers who say that you can't take care of your LO at home, that she or he will just get worse etc. That is not always the case and I'm of the opinion that yeah they do get worse -if placed in a facility and removed from their loved ones and familiar surroundings-. Think about it, a move is hard for anyone normal but now image your cognitively impaired and are elderly and suddenly you're in new surroundings with people you don't know and where the food stinks. Would you really want to stay at that place, would you want to even eat? And in most of those places the elderly don't go out -at all- so good luck getting fresh air and sunshine. Some elderly truly have nobody and I understand that is a reality but from what you wrote there are many siblings who all live close enough to each other to be near so you are in a better position than most. Some families have siblings spread throughout the country which makes things harder.
I could go on but an avenue to keeping your mom at home is to pull your financial resources together as a family and hire a Home Health Aide, preferrable with a CNA title. You can call and shop around. Not sure what the rate is where you're at but even 20 hours a week can go a long way to help the primary caregiver do his or her job. In fact, the current trend when it comes to elderly resources is to keep the elderly in their own homes since they decline when they get place in facilities. That's not me saying this, talk to anyone doing community work for the elderly and they will confirm this.
If you cannot find anyone as a lot of women who have done this have left the profession then you and/or your sister will need to move in with mom so she's never alone.
It's a bitter pill to swallow but keep in mind is that facilities had problems keeping staff due to low pay and a lot of elderly people to take care of. This was before Covid.
After Covid the staffing levels have just gotten worse with many aides who worked at those places quitting because of Covid. So who knows who many or how few people will be taking care of mom. Even if you find a facility with great care, there's no guarantees the staff won't change or the facility won't be sold causing staffing changes. And from reading these boards, putting your LO in a facility brings in a different set of stressors such as if mom falls or has a psychiatric spell they will be calling either you or your sister to decide what happens. And some elderly who become too difficult are conveniently kicked out of those places. So uh, you might be in the boat of bringing mom home again after placing her in a facility and then having to deal with finding another one. Such moves are traumatic for the elderly and make them act out -a lot more than normal- increasing the likehood of another facility eviction down the line. I know because some posters have written on here about their loved one being kicked out of more than one Memory Care or Assisted Living facility and them not knowing what to do. And again this was before staffing shortages due to Covid which made everything worse.
You're both good daughters. I know this decision is hard. My opinion on this is to just not give up on keeping mom at home with someone or someones (more than just you) there all the time so mom is not left alone. It is hard but it doesn't mean it won't be if you place her somewhere either.
Whatever you decide, I advise you not to argue with your sister in front of your mom. While she may not be all there it will pain her seeing her two children argue and you don't want mom witnessing any of that as those with ALZ do not respond to logic well but can still pick up emotion. In fact they seem to get better at picking up emotions than most.
Best of luck to you.
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This is a difficult situation all around. Not just having sibs on different pages in terms of their intentions for care of mom, but also the complication of the muddy legal situation where the financial piece is assigned to a committee and the medical stuff to one individual. This just makes everything harder. I agree with towhee that bringing in a professional geriatric care manager would be a great way to move forward. Dad's memory center had social workers on staff who were available to navigate minor family conflicts the arose from denial, conflicting beliefs and agendas.
My experience with moving dad in the middle and late stages was only positive. If anything, moving my parents closer to me in the middle stage actually improved dad's level to function for a number of reasons. When we eventually moved him into MC, he improved a bit again. I think it was his willingness to cooperate for the consistent roster of professional staff and the structure/socialization of dementia-informed care were better for him than fighting my mom's attempts to care for him. Perhaps if you toured some good quality MCFs with your sibs, they may be more open to placement.
That said, I sometimes question the motives of family members who insist against all evidence that a PWD remain in the home with a couple hours of professional care. I always wonder if there is asset/estate preservation being factored into decisions.
Unfortunately, economics enter into the decision for many families. The reality is, unless a PWD is wealthy or has great LTC insurance, choices need to be made so that limited assets can be utilized effectively. That might mean family doing shifts as hands-on caregivers to limit the number of CG that must be bought. IME, going back 3 years, an agency HHA cost just over $30/hour with a 3 hour/day- 15 hour/week minimum. More for overnights and holidays. A MCF ran about $7200 here (middle of the pack where I live). Now here's the thing, the nicer MCFs in many locales operate on a business model where a PWD moves in as "self-pay" for 2-3 years before converting to a Medicaid bed so if you have spent the assets up front paying for care in the home and then decide a facility is better/needed you may not have sufficient funds left for care in a nicer place at a time when your LO will be even more dependent and less able to report on the quality of care.
HB
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Just to be clear to the group- I am not pro one option or another. Every family is different, and we all know how difficult this decision is. I simply wanted to present some obstacles I am facing while also making this decision. Having done the at home care for several months now I have a better understanding of the logistical toll it can take (I'm not even talking about the emotional!). I have often thought how much better our interactions would be if she was taken care of in a facility and I could focus on being her daughter, not her nurse, personal shopper, therapist, cook, landlord, handyperson, etc. But the flip side is real. No one takes care of family like family, and the shock of moving to a facility from home is real. I just hope her family can come to some sort of decision that is best for mom and those taking care of her, having weighed all the factors.0
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Thank you all for your words of wisdom. We had a family meeting yesterday and in a weird twist of events my sister did a 180 and said she thinks memory placement is what we should do. I presented the case of paying for 24/7 Homecare, and whether it was the cost (probably) or realizing they couldn’t care for her anymore, they agreed to place her as soon as possible. In fact my sister had already visited one place and had an appointment with another. I’m glad it didn’t come to a confrontation and there are a couple very nice places that we are going to look at. It’s still so hard but I do hope, like some of you have said, it maybe puts a little encouragement back to my mom. I was with her all day yesterday and while she’s walking better every day she seems to be aware of how all she does is lay down and nothing else. She said as much to me. Again, thank you all for writing and giving me hope and help. Prayers for everyone.0
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Where a LO should live is different for every family. It comes down to what’s the safest and most practical way to receive dignified care. Some LOs thrive only at home, some at a facility.
There’s no right answer, it’s all hard no matter what the situation is.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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