I have an agonizing decision. What should I do?


I haven’t posted in quite a while but have continued to lurk here. My story began with my Dad having dementia and my parents (now 84 and 85) moving to an independent living apartment close by my house. I started doing most everything for them..financial affairs, grocery shopping, driving where they needed to go. My mom was still able to do some things like cooking, some cleaning, laundry. Siblings not helping but occasionally promised they would come and help and allow me some time off. (that never materialized) Fast forward almost 3 years to the present and my Mom has now gotten a dementia diagnosis as well. Both parents still have fairly good mobility, aren’t incontinent, have dementia but I would say still somewhat high functioning . The situation now is I have caregivers at night and during the day so that I can sleep and work. They do have a sizeable amount of assets to afford such care so we are lucky on that. Even with the caregivers tho I am the one responsible and I go in the evenings and on weekends when I am not working. My life pretty much consists of working and taking care of them. My siblings don’t help at all. In fact, they won’t even respond to my texts. My dad had pneumonia a couple of weeks ago and I sent a text begging them to come help me. My dad in the hospital and my mom who had bronchitis at home. My sisters didn’t answer my text and my brother texted and said hire more caregivers. Their solutions always involve something that I can do.. without disrupting their lives one iota. That fact has stayed consistant over the last 3 years.. I have one brother and 2 sisters who live at a distance but are not helping.. not even as a support of any kind. They don’t call my parents, check on them.. nothing. I am looking into memory care for both of them and have looked at a few places. The problem is that it is so difficult for me to see my parents in such a place as they are higher functioning than most of the residents in there. Also I have no support system so I will have to really pull myself together to have the emotional strength to handle such a move... I just don’t know how much longer I can handle the current situation. I worry all the time.. the last hospitalization of my Dad almost brought me down. What do you do when they need care but are in that in between stage? I have found some very nice memory cares but I worry they will go into a deep depression as they don’t really realize they have dementia and there are people there that are much more advanced.. slumped over In chairs, walking around mumbling carrying a teddy bear.. etc. Such a hard situation to be in and with no emotional support what so ever.. the only support I have is hired… I haven't had a break from this in the 3 years that this started...no weekends, holidays off.. no vacation.. not sure how much longer I can go like this.

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I empathize with you as I have been the caregiver for my near 94 year old mom for 10 years while my siblings do next to nothing - both are retired with pensions and I'm working

She has been in a memory care facility for a year and I have personal caregivers with her 12 hours a day - memory care is AL and no real care is provided - they just put up with behavioral issues more than other places

Unfortunately her assets are dwindling and I can't afford to continue using my savings to keep her going so please be grateful your parents have assets but expect they could live another 10 years

A few younger residents at mom's facility are high functioning and I frankly question why their families place them there - their lives would be so much better in AL with better food and activities

I take mom to all her dr appointments still but I'm starting to cutback on visits -
I used to be there 20 hours a week after working 50-55 hours

Dementia is a long tiring journey for everyone and your parents are just beginning this chapter

Don't make any hasty decisions in choosing the right place for the long haul - it is disruptive to move them but sometimes it is necessary

If you haven't already done so, please get legal affairs in order - POA - and consider their medical care ahead

My mom refused to go to a neurologist when her doctor referred her and her behavior escalated beyond what anyone could handle

There is a wealth of knowledge available on this site from people who have experienced it all
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Katie not knowing your parents personally it is difficult to judge just how much care they need.
My feeling is that they will be intensely unhappy in memory care with the more advanced demetia patients if they are still reasonably able to understand what is going on around them.
Can you place them in an assisted living facility with the option of moving them on to memory care when they really decline. Check and make sure that staff will be available to make sure they get to meals and activities. I do not know how much care assisted living facilities provide.
Be kind to yourself and continue to look for the ideal place. Is it possible for them to go somewhere for a couple of weeks rehab so you can get a vacation. I know most peoples first thought about going away is " What will I do if there is a crisis while I am gone" The truth is that a crisis will happen whether you are home or not.
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Katie, the state of the art layout is that memory care is on the ground/first floor, with access to an open-air enclosed atrium; and assisted living is on the floors above. The idea is that more able residents can easily use doors and elevators protected by entry codes, but the people with dementia can still move about freely in as large an area as possible with no risk of their straying outside the building, and have easy access to activity rooms, dining rooms, lounges and so on.

But never mind scenery: the most important things are staff to resident ratios and cultural attitudes. There isn't a simple dividing line between needing AL and needing Memory Care. A good facility will assess your parents' needs individually and as a couple, figure out the best fit, and adapt their care plan as time goes on.

Do you have a fair number of them you can go and visit?
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Thank you everyone for the thoughtful replies. I will read them more carefully when I get off work... that is more thoughtfulness then my siblings or family have shown me in the last 3 years..

Jeannegibbs-- I did have one assisted living tell me that some people with dementia can be in assisted living. My parents don't wander (yet) or are disruptive. However, I do have night time caregivers for them as they can either or both wake up at night and not know where they are. My dad sometimes wakes up fully dressed and wants to go somewhere (not often but it has happened).. the caregivers can redirect him and he doesn't fight them. If they went to the cafeteria in an assisted living I don't think they could find their way back to their room, they would be missing meals unless they had someone to take them and bring them back. Just wanted to get some ideas if that Is still a possibility I should pursue ? Also.. as far as memory care...so far I have preferred the ones that are not connected to an assisted living as it seems like dementia care is more the focus and some of the ones connected to assisted livings is more of an afterthought.. a wing they keep locked (of course I have not explored all options yet and have not completed my search).
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KatieKay, I'm not sure how much longer you can go on, either.

The way to look at it is this. If you make the move to the right centre *now*, your parents will have each other, they will be comparatively high-functioning, and they will have a fair chance to get settled and familiar with their new home.

I do know what you mean about the other residents. Though I have to say, although at one place we visited I quailed at the lady mumbling her soup, and another resident on an actual hospital bed in the TV lounge, my mother didn't turn a hair.

But, so, what, wait for your parents to be that diminished so they'll fit right in? Better to get ahead of the curve and let them establish good relationships with the staff, at least.

When it comes to choosing which facility - and it's lucky there are some assets to work with - a continuing care facility would be best in your parents' case, because you can't predict exactly what their care needs will be or who will need what first.

Oh - and siblings, shmiblings. That's all I've got to say about them. Forget 'em.
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Why are you thinking they need memory care? Do they wander? Is their behavior disruptive? If both of these are NO it might make sense to consider Assisted Living. (Often half or more of the residents in standard ALs have dementia.) There would be many residents who are also high-functioning there, and it won't seem as dismal as Memory Care to you. Perhaps find an AL with a memory unit that they could move to if that becomes needed.

My daughter works in a lovely AL. They've just expanded their memory care units. They admit some residents directly to Memory Care, and they move residents from the regular AL if they start to wander (and therefore need a secure place) or their behavior becomes disruptive or they decline to the point where they need more care than the AL is staffed to provide.
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I know I answered this already--but wanted to add this: Many people literally cannot bear to see someone they love age and change. Staying away is their only option. My youngest sis will call or visit mother once in a blue moon and I inevitably get an email "Holy Cow! Mother is so bad! Did you know??". Yes, yes, I do and because I see her regularly, and it is sad, it is also part of life. Same sister couldn't bear to watch my sweet dad die from Parkinson's. She made it to the "death bed" and was hysterical. Had she been a part of his care all along, she would have appreciated the dignity and peace of his passing and not felt the need to freak out. I fear the same will happen with mother.
I have a daughter who is terrified of senescence (aging) She can barely stand to see my mother once a year when she visits. She is so upset by the decline, she gets panicky and kind of out of control. She's 32, so that's not likely to change. She could barely stand to go to my dad's funeral--refused to be in the viewing room and wouldn't join the family until everything was "locked up".
Not everyone is cut out to caregive--but we still have to stand up and big grown ups. Or not. I guess some people can just check out, so to speak.
Life's funny, we all get old. It's the consequence for being alive.
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I have read that most family members think that their loved one is less in need of care than they really may be. I'm not sure why. Why not work with a professional who can properly assess them, based on the information you provide, your parents provide and what the professional gathers from her own observation. I would make some arrangements earlier rather than too late. Often there is a crisis and then you are scrambling to find help on an emergency basis.

If you do go with an AL, I'd explore in detail just how much support they will provide in that section. The reason is that some of them just don't have the skills and training to manage and handle the needs of people with significant dementia. It can be very confusing and frustrating for the resident and the family member. Getting the right level of care is vital.
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Dear Katiekay,

I'm very sorry to hear what you are going through. Its a tough situation. I know its been hard on you. You are trying to hard to do the right thing. You sound like a very dedicated and dutiful daughter. I hear you. Its extremely frustrating when all the burden and responsibility is on you and there is no help from the siblings.

I was like that and I, too, was getting to the burnout point after three years. Things start to escalate and you don't know where to begin to look for help or how to even help yourself. My anger and resentment was building against my siblings. I feel it affected my compassion and judgment when it came to caring for my father at home after his stroke.

Please try to speak to a social worker, family therapist, counselor or join a support group. I know you are trying to do the right thing. Its never easy. Hopefully you can find the right balance for your parents and you. Don't allow yourself to get worn down further and more frustrated. My father has since passed and I have a lot of regrets about the last year of his life. I hope you are able to find the right balance for yourself and your parents.

Thinking of you.
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Well, you're not alone in the "absent siblings" dept!! That's small comfort, I know.
I think you are going to their place too much---if they have that level of care, you shouldn't feel you need to be in their lives this much. Step back a little and nurture yourself.
Looking into moving them together to a higher level of care seems very smart. AND don't go everyday. They may not even be aware that you are coming that often.
Your parents are elderly, they are going to have falls, illnesses and things you cannot control. Sounds like you are trying to control the whole situation, and, well, you can't.
I'd check into moving them together to a less independent-style of living. Possibly in the same facility? so the move won't be duly upsetting.
And, worrying? You will make yourself sick over the "what ifs"....and then you won't be any help at all.
Sorry about the MIA siblings. No consolation, I know, but that seems to be the "norm" here. I can't PAY my sibs to visit mother. Or call. It is what it is.
Take care of yourself first. Then mom & dad.
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