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I’m 66 and have become the caregiver for my 80 year old sister. We are/were best friends and she lived across the country. I started noticing mental decline on my visits in 2020. She is twice widowed and lived alone, still driving and independent, but going downhill.


Her daughter and I decided (with her cooperation) to move her to a retirement community very near me a year ago. Her daughter lives in another state so helpful administratively, but not hands on.


My sister has a lovely apartment with a full kitchen and meals in dining rooms around the community.


We are very fortunate that she has resources. In the last six months, she has declined mentally dramatically. We have hired caregivers for several hours a day and she goes to memory day care 2x a week. I cover Tuesdays and weekends and still feel guilty for “passing her off." My family is not happy I have taken on so much.


Blah, blah, blah. My question is whether to move her to memory care or hire caregivers 24/7 when it comes to that.


Appreciate any advice!



Trish

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The reality is this: needing up to 24/7 oversight by aides may end up being AN ADDITIONAL COST to placement in a memory care unit. My 91 y/o sister is in a locked memory care unit. When she fell when trying to go to the bathroom in the night it was apparent her ability to do this was ending. The memory care unit will discharge her rather than take responsibility (aka liability) for this.
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Guilt is all part of it. None of us get away with not feeling like we did enough. The sister you knew has probably changed a lot, and the one you were closest to is no longer here. You might see glimpses though. If you can afford 24/7 caregivers that is wonderful. If not make the move when you need to. Caregivers deserve quality of life too. If you visit I think you will see what is best for her.
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I agree with most of the responses here: Transition her into MC (memory care facility).

However, what are YOUR concerns?
You pose the question to us due to how you are feeling about it -
uncertain?
guilty?
tired/exhausted?
want more quality time for yourself/your life
- this is OKAY to feel and want, although it sounds like you feel some guilt around this desire - which could be partially why you are asking us. (And good for you for reaching out to us!)
- torn because xxx (write this out for you. Sometimes writing and seeing in b/w provides a different perspective).

* We are on the outside looking in and that is all we can do.
* Your heart will know what to do.
* And, therapy may help you figure out how you feel and what is right for you, and your sister.

* I am thinking more so of you/r - quality of life and your age. You deserve to live more of your life without this stress, no matter how much you love her, it is stressful. This isn't to say that you do not care, clearly you are a very loving sister. However, it seems to me that having your sister reside in memory care will serve both of you well.
- You will have as much access to her as you wish.
- You can take her out as you wish.
- She will be with constant (employees / CNA - she will get to know them) vs the possibility of caregivers 'coming and going' (and as one response here indicated, they may cancel a shift and then you are on again, and in an emergency situation. You do not need this responsibility (at 66) ...

(As you indicate), you are grateful you/she has financial options. In the nicest of ways to say. this "take advantage of these resources" - This is, in part, what they are for -
* When your negative 'self-talk' comes up, reframe it to positive words "I am doing what is in the best interest of xxx (sister's name). I will continue to do everything I can for her. I know she would want me to be happy and enjoy my life as much as possible."
- You can come up with your own positive responses. Write them down and read them.

Gena / Touch Matters
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LenLevin Mar 2023
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Tmounsey56 It's time for memory care NOW.
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I would check around for different MC options. A true MC facility will have doors to the outside world that require authorization. As someone suggested, try to find one that will take her to end-of-life.

The range of activities and the amount and where the memory is affected in MC differ quite a bit between MC. You will need to find one that is compatible with you and your sister's needs and living. Because you want to see her, I would thoroughly investigate their visitation policy. Does your sister watch the television or use the internet? If so, you would want to find somewhere that has amenities that are close to what she uses now.

MC living usually comes with toileting, giving her a bath, laundry, medication management as well as 3 meals plus snacks and socialization.

Once you find something that you truly like and you think she will like/benefit, it will make sense to you, to move her to the facility.

You wrote: "My family is not happy I have taken on so much." Is this your own husband and kids? If so, it sounds like you are not as available for them as they would like. If you unable to portion your time successfully between them and your sister, I would suggest that you get a therapist to help you with this. Moving your sister to a MC unit, may not satisfy their concerns.
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I would hire as many caregivers as needed to keep her safe where she is as long as there is enough of 'her old self' still there. As you see need for 24/7 higher level of care, then move her while her mind still understands she is moving.

There will be a sign for you to know it's time. She forgets a pot on the stove when someone isn't there, she gets lost going from point A to B. If her current downhill has her in a rather in between state, it might be time to move her now before she wanders or does something to put herself in danger due to so much freedom. Plus moving her now will familiarize her with new surroundings and may not cause as much confusion for her if you wait.

You say she is still driving, but have you ridden in the car with her recently? She may be past the time of driving safely or knowing where she is all the time. I would not let her drive alone anymore if you are seeing a decline. And definitely get her a medical alert with gps so you can see where she is at all times. lively.com makes a great one, even on sale right now for about $35, regular $50. Plus a monthly fee of about $23. You can order from lively.com, but I think Walmart still sells them too. Enter all the contact numbers in order you want to be called, doctor and med info, etc. Then you can go online if you want to see where she is. Might take a few time of reminding her to wear it, but it is very helpful
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Memory Care over in-home aids. Socializing with people your own age is important, even for those with dementia.

Curious about what you mean by saying she lives in a "retirement community". Do you mean an IL? Or just a 55+ neighborhood?
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Trish March 13' 2023

Sister sister, how many years have you personally been the Caregiver. You said her daughter and you. Made this decision, yet did you converse with your ok immediate family. Mmmmmm. Yes decline if a human being does come. Did you two think of that . Family first and yes you have one . They are feeling know negative towards this decision.
She has a daughter, how did she avoid this and to live her life . The Bible says honor they mother & father. ( No disrespect)

Finicial have you even inquire the monthly price of a month base on assessment clost to $11,000.
Which you would be better off 24/7 care service . She's 80 of Glory Age.
Memory Care does there part , yet when she declines past to their inquirement if care. You would be looking for Nursing Home.

Strong suggestion One stop shop a facility that has it all as she declines. She stays in that facility. They gave different sections for that. Also get that daughter on board 100%. The decision should be hers. Are you her POA Medically/Finicial. Ok just telephone a couple memory care just for a ruff price . Do your homework, also if she has a house and receiving medicare /medicaid they will take her property. Get someone else's name in deed if she's able to sign . Call Elders Law they assistance great also Area For The Aging . Telephone her PCP they can do a lot with a stroke of a pin .
Peace been there .Roller Coaster
Brown Sugar ☮️
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I moved my mom over 10 years from home care to assisted living to memory care to nursing home to end of life home. There wasn't a one building option for all the steps in her decline. At home the care givers were difficult to manage, even through an agency, because they would get sick or have their own family issues and I'd have to train new people. It was confusing to Mom too. In assisted living with Alzheimer's she did well, and also did well in memory care. The issue I had with memory care was the visitation rules, that I was only allowed 2 or 3 visits a week when I was used to seeing her every day. If you visit her often in memory care, you will see whether or not your sister is being well cared for. When it seems time to make the move, then it is probably time. She won't have her refrigerator and maybe not a full bathroom any longer, most likely a single small room, and will be encouraged to be in the common room for socialization. I suggest you visit the facilities soon to see which will best suit her needs. Then make a plan. It will simplify your life quite a bit and at the same time, simplify hers, which will help her.
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Keep in mind that this could go on for years. I would transition her to memory care. You can visit her often. Take her lunch, be involved as much as you like, but the entirety of her care will not be on your shoulders.
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My mom is in MC and I have 7 day a week 4 hours a day caregivers to give her personal care of showers, lotions, walking partner, mouth care, fixing her hair, reading to her, hydration! And encouraging her to eat 2 meals-they take her to the AL dining hall and she loves it. I have snacks and her favorite water (Propel-electrolyte) in her room too. (this place allows a frig). What I like about this arrangement is that my hired help report to me! I get pictures of mom, I get a brief outline of the day at the end of each shift. They work 1-5. When I didn’t have private caregivers, I found that the AL and MC staff did not communicate with me and my mom would be upset and could not express herself when I called her. Her caregivers have bonded with her and she likes them. I have peace of mind knowing that she is cared for so well and they know how to negotiate with her without her getting upset. They can call me if she pushes back too much-doesn’t want to each/drink/wash up. My mom happens to enjoy sleeping a lot, but she enjoys their company when they are there.
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MC will be less costly. Caregivers can call in sick and you will have to jump at a moments notice. MCs provide enrichment programs and entertainment almost every day similar to day cares. If she was kept at home she would not have as many enrichment programs. This is also a place for her to meet new friends. My mom was very outgoing and enjoyed friendships in whatever place she was in
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Sounds like MC is a good choice. How does your sister feel about it?
My sister also has Alzheimers and for the last two years, we have had 24 hour home care. She is physically perfect. She walks several miles every day. Her memory is terrible and her judgment is poor. She has been adamant for years about staying in her own home and financially is able to do so.
I will tell you, it took a while for the agency to find 24 hour care. We have been blessed to have excellent caregivers. BUT, it still takes a lot of management from my end. And, it IS extremely expensive.
If your sister is agreeable, I would recommend MC as soon as possible, while she is able to socialize and settle in.
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Move your sister into the memory care facility NOW. Sorry to see that she cannot live unsupervised for a second with Alzheimer's. Absolutely stop her driving previleges for her's and others road safety.
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A memory care facility will be cheaper than 24/7 caregivers. I moved my older sister from assisted living to a memory care unit a few months ago. The facility was great helping me with the move. I'm not saying it was easy but it was what she needed. She could not manage daily living tasks, was paranoid, confused and hallucinating. The facility had an opening in MC and helped me get ready for the move the following week. I did not tell her beforehand--there is no reasoning with her. I didn't want to wait until it was a crisis situation and not have a place for her to go. She was not happy at first but she has adapted. Now she is safe and well cared for and cannot wander. She likes the staff. They also have activities and exercise classes if she wants to participate. MC has helped both of us.
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I think she would transition easily to MC. Particularly if MC is in the same community.
You could start out by having her go to a few activities in the MC so she gets to know staff and some residents. (Is /if the Memory Day Care is in the same building or in the MC unit that works perfectly)
You could then tell her that her apartment is due for some repairs and she could then move in to the MC.
She is lucky to have you looking out for her.
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Believe it or not, placing her in a memory care facility will be much less expensive than hiring 24/7 caregivers and lots less stressful for you trying to coordinate the caregivers.
Plus they will have activities that will keep her busy if she so chooses.
Your sister will be just fine in memory care and you will be able to get back to just being her sister and advocate.
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Memory care for sure! Managing home caregivers is very difficult, as is finding good ones. Read some of the posts on here to learn what's involved.

Home caregivers cannot provide as much care as a facility can. Socializing is better in a facility. Equipment is already there, and you don't have to buy it, rent it, clean it, find a place to put it, and make sure the caregivers know how to use it. On and on and on - I've done it for both parents. I'll never do it again as long as there's another option.

There's also an issue of personalities. The home caregivers must get along with each other and be able to cooperate. You'll need insurance to cover them in case they hurt themselves taking care of the patient. You'll need to master and manage the payroll taxes.

If sister is in a facility, you might be able to take more time off. Tuesdays and weekends is way too much time to take away from your own life.

I hope she's not still driving. If so, you'd better address that right away.
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Tmounsey56 Mar 2023
Not driving!
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MC would be the natural step up, the sooner you make arrangements the better for all concerned.

There is no room for guilt when dealing with a person who has dementia. You do the best you can and accept the facts of the matter.

I have 2 in homes 1 AL the other MC, both are well cared for and safe, they are just where they need to be.

Listen to your family, they must come first. Becoming self absorbed with your sisters issues will help no one.
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I vote for memory care. Please know that you are NOT passing her along. You are being responsible by seeing that she receives proper care by having her placed in a facility where she has 24/7 care.

Resume your life with your own family. You can be an advocate for your sister and visit as often as you like.

Best wishes to you and your sister.
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