When did you know it was time for memory care?
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Longbee, welcome! I'm sorry it's necessary to be here.
The part about stress, anxiety, and sleepless nights would do it for me. Think of when he was the Daddy and you were the little child. Would he have wanted you to hasten your own death on account of him?
This next is blunt and sounds mean, but today's my day to speak bluntly, I guess: for whose benefit are you "not ready to let him go"? If you are wanting the security blanket aspect of having dad around, I think if you look at your day-to-day, you're not enjoying much security. You are "on" all night every night, plus weekends. Sadly, he will only get worse-- and so will you if this keeps up.
How about hiring some overnight help too?
As to how to work through one's personal aftermath to placement, everyone does it differently. There is no right or wrong. This is a horrible disease. Don't let it take two of you.
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I put people in care homes (two LOs so far) when someone else can care for them better than I can. In your case, you said you can't sustain the level of care your LO requires. An institution can sustain the level of care he requires, because their staff works in shifts and can get some sleep. In your shoes, I would think it was time for placement. You are working for a living, and taking on a second job that takes about 100 hours a week is way too much.
You will not be abandoning him when you place him. You will be finding the best place available, and you will be visiting to act as his "squeaky wheel" and make sure his needs are met.
I put my son in an institution when it became clear he could not live independently. The alternative would have been to move him back in with us and let him find his way alone after we are gone. I don't like the way he has to live, but it beats prison or living under a bridge. Doing as we have done, we have had years to back him up while he adapts to the life with which fate has saddled him.
My mother would have died in a week in my house, because she required a medical level of care. Easy decision. She lived several more years in care, receiving frequent visits and enjoying outings like lunch in a restaurant and a walk in the park.
I was able to retire when my wife began to need a "keeper." She is not a lot of trouble at this time, but I am taking over more and more of the "adulting." As her condition progresses, and my ability to provide care declines with advancing age, my decision to care for her alone is subject to change.
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My mom moved from the AL side of the building to the MC unit when she got back from rehab after having a (mild) case of Covid and pneumonia.
I had suspected for a while she needed MC before but upon return it was clear especially when the facility did an eval and she flunked badly. I didn't know if it was Covid fog or combo but she has been declining rapidly still since the Covid in January.
Getting her to move downstairs was easy. We never called it MC. We just said no elevator to deal with (she's in a wheelchair) more aids around, etc...
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LongBee2021,
The decision for memory care is not an easy one for anyone. In many/most cases, our loved one’s behaviors and daily needs force us to pursue a higher level of care. It sounds like your dad is at this point and as you have observed (and know from reading), he is going to continue to decline.
In my experience with my mother, I hung on with private care in her independent living apartment trying to avoid a memory care unit as long as possible, because I knew with Covid, I would be disallowed to see her. However, her needs were becoming very difficult (even with round-the-clock) care. I was forced to make a rapid placement decision when she was hospitalized, to send her to memory care when she was released from the hospital. It was a more difficult transition for me than for my mother.
The most helpful way that I have found to reconcile all of my emotions (sadness, fear, anxiety, etc.), about her placement decision is to re-frame any negative thoughts. I know (just as you do/will) that I made a decision about keeping her safe and cared for each day and night. This is a decision that will also ensure that you are able to get the rest and care you need to continue working. The decision is one made of love, caring and kindness and should not generate guilt or feelings of your abandonment of him. We all have our breaking points. I have had more than a handful of days where my bp was in “stroke range”. Being in that overwhelming care-giving state where you feel like you’re on the ledge...is not a healthy place to reside in. You are smart to recognize your own needs, as well as your dad’s.
Please know that you will fall into a new normal with your dad in placement and he will adapt as well. I wish you luck on this journey. I can tell from your post that you are a loving child doing the best you can for your dad.
Take care.
Sandy
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If you frame it as abandoning him, there never will be the day when it is time.
And your well being will suffer, and possibly his.
I worked my butt off being my Dad's advocate once he was placed. I did not abandon him.
Placement is far from being 'hands free' unless one chooses.
IMHO, the time for placement is
- in advance of a crisis, (because you don't have as many options at that time)
- in advance of a deterioration of health and well being of the primary caregiver
- if an accelerated care need occurs (thresholds are frequently exit seeking, behaviors, incontinence and night wakenings/not sleeping for the family)
- sometimes earlier is better - that is, a PWD can benefit from compassionate, dementia specific staff and activities, a scaled down room. What we see as loss, may be their gain
- if you are asking, there is a reason and it's a strong indicator that the time for placement has come and gone, and you are so tired you can't see the forest for the trees, as they say.
Remember, there are 3 entire 8 hour shifts of staff that care for a PWD in a facility. So no one had better question my decision that it is time. Assuming a stance like this makes you less likely to be hurt by careless comments
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I’m sorry for what you are going through. I went through many of the same emotions. We came to a point it was unsustainable for us and we felt my FIL had no quality of life here as well. He did walk outside, but mostly just sat staring and “checked out”. He lost interest in activities and communication.
While his dementia has not improved, he has been in a much better mood at MC. I’m glad we moved him when we did because he is able to interact with people and has made friends. He has gotten to know the caregivers and likes them. He doesn’t always participate in activities but seems to enjoy watching. While I felt terribly guilty in the weeks leading up to placement, there is no doubt we did the right thing now. I am very glad we didn’t wait until a crisis. The nurse there said most people wait until crisis mode and it is much harder on the family and LOs than when they are still somewhat lucid.
I also like that the facility we choose does not have visiting hours, family members can come at any time and are free to visit in the apartment or outside, but during our visits we saw family visiting in common areas (with masks) and eating together in the dining room as well. All in all, the MC we chose is a very upbeat, pleasant atmosphere, where residents can come and go as they please, just not outside the facility (except with a caregiver).
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Scammers..... I hate them.... I have a lovely 90 yo Auntie with whom I'm very close. She lives on the East Coast, and me, the West. She won't come here with me and I run a business and can not relocate to NY. She was diagnosed 4 years ago but it really hasn't effected her in anyway accept she's prone to phone scammers. She has always wanted to age at home. I promised her I would keep her home as long as I could. She's been functioning very well with care givers 4 hours a day. Then she decided to pick up the phone and be swooned by a scammer.... She loves the work they give her to do and the time they spend with her on the phone. She swears she's not getting scammed and they are just friends. Between myself, caregivers, lawyer who is POA, her family friends, priest, neighbors.... she refuses to believe that she is getting scammed. We have to date, blocked her from sending away all her money. Now she is just mad at us for taking her money away from her. The care givers can't keep her safe any longer and have found a place at a memory care facility. We have told her there was a gas leak and she needed to stay at a hotel until it's fixed. She's been there a week and hates it. I'm across the country and I'm I wreck. I want to move slowly with this. But the guidance just isn't there. I'd like to draw out the gas leak for awhile, maybe she'll acclimate? Then tell her they have to buy the house, it's uninhabitable. Then she has a choice, stay where she is, or come to California with me. I feel this gives her choice. And... she can 'save face' b/c she hates the fact that she's around old people. ( lol ). She thinks she's 30 or something. The people at the MC center say honesty is the best policy and I say, Why? She's impaired when it comes to reasoning. Why not empower her in any way possible? I need some input and have none. Please help.0
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For me and my sisters- we knew mom would eventually reach a point where her care needs were beyond our ability to provide. Alzheimers is brutal, as you know, and it only gets worse. Being a full-time caretaker literally takes years off your life, and we didn't believe mom would have wanted us to sacrifice our own lives for her. We also knew we didn't have the finances for round-the-clock in-home care. With that in mind, we decided it would be more kind to place her in memory care while she was still relatively "with it," in the hopes that it would become at least somewhat familiar and safe to her.
Moving her in was brutal and heart-wrenching, and my sister and I ended up basically going out together after and drinking a little more than usual because what else can you really do, and then working with a therapist to process it all. Looking back though, it was absolutely the right choice to place her when we did. She's gone downhill quickly in the last year, and there's no way we'd be able to care for her at home at the point she's at now.
When she first moved in, she was able to make friends with some of the other residents that were still sort of "with it," and she'd tell me happily about her best girlfriends and how they'd known each other since high school. I'm not sure how much she interacts with them at this point, but she does feel comfortable there now. She's so much safer there than she would be with us, and gets much better care than we could give.
And for me personally, having a bit of distance from the day-to-day care is a godsend. We still have to do a lot of difficult, emotionally draining care, but it's really nice to have at least some days where I can just go and be her daughter and visit, versus having to be a full-time caretaker who changes diapers, gets her dressed, and gives her a shower every day. Sharing the emotional load with professionals is huge.
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Thank you all for the help. It's helping me see reality as well as what is best in both the long and short term for the both of us. I'm so sorry for everything you've all experienced.
Verb & King - I'm sorry for everything you're going through as well. What you said is almost verbatim what my therapist has been saying to me. Right now I am definitely in the emotional gut wrenching phase. I know everyone has been saying the hardest part is the initial move into the facility and the weeks thereafter adjusting, but after that it was relatively smooth sailing (as smooth as dementia and Alzheimer's can be). I am so scared of moving him "too early," but I am also scared he may fall again or suddenly decline. He was absolutely fine in terms of taking care of himself last year and suddenly January 2021, he falls out of bed (but thankfully he didn't hurt himself. He kinda just slid out of the bed and gently landed on his butt) and suddenly his memory is gone and he is incontinent. I told my therapist last week that I know all I am doing is putting off the inevitable, I may as well just get it over with. Like what's the difference in moving him now and moving him next summer? Regardless I have to move him by next spring or summer so I may as well just start the transition now. I know it's better to move sooner rather than later for a variety of reasons. I am going to spend the next couple months researching facilities and possibly move him this year before winter. Again, thank you.
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Everything to do with dementia is hard, and heart-wrenching. One thing I read on these boards when I first joined really stayed with me. remember this is something you're doing FOR him, not doing it TO him.
Good luck.
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Hi LongBee2021 --
I told my therapist last week that I know all I am doing is putting off the inevitable, I may as well just get it over with. Like what's the difference in moving him now and moving him next summer? Regardless I have to move him by next spring or summer so I may as well just start the transition now.
My sister is stage 6 as well, and I plan on moving her to memory care sometime this year. I don't want to, but I know that she'll get better care than she will at home - I can't be home 24/7, and even with extra caregivers, it's starting to be too much for her.
I probably could wait longer, but my therapist told me that it's better to move her earlier rather than later so that she can make routines. Having those baked in routines acts to cut stress. It kind of makes sense to me as I watch my sister move through the day.
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I read the turmoil you have been going through with your dad, it is almost the exact same feelings I have been having with my mom. I have had so many sleepless nights, when I wake during the night helping mom is on my mind, it is on my mind all day. I worry endlessly. She ended up having to go to the er and now is in skilled nursing. And with covid she has had her stay extended for safety. They were going to let her go to assisted living and I was very worried that she may need memory care and very torn. As with one I felt she would be more able to feel it is more normal to what she has been living and with the other I felt doom. But now, the people are telling me she is having to only be placed to memory care, it is out of my hands as to what sort of place. I feel relieved, as her doctor said this is the only type of place that can care for her now.
I haven't told her, I know she will just be very upset. From the past weeks, all the sudden her memory is way into past events decades ago, and not any memory of things in February. If I press what events, she has no recollection.
And you explained very well, you can't go on emotionally which you are being very open as to how much more emotional strain you can take. I commend you, knowing your own bounds in this. No more can be expected, you are doing this out of love for your dad.
And in reading the replies, it is comforting to read to remember you are not doing this to them but for them. At times, many, I feel like I am some sort of relic from the past and I am some sort of live your life this way mom enforcer, really. All the decisions, and what if's really take a toll, you wanted I am sure we all want to make the best decisions for our loved ones while still being able to not have our entire emotional life torn to shreds. Which, making these decisions, does do to your life.
Thank you for posting, your questions and replies are very helpful and healing.
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My siblings and I decided MC was necessary for our mother once she was diagnosed as having Vascular Dementia while she was in rehabilitation for not taking care of herself.
She broke her hip in March 2015, had surgery and went into rehab for 3 months when she was diagnosed with Sundowners Syndrome.
Her hip replacement failed in late 2016 so she had another hip replacement in January 2017. Rehab lasted another 3 months.
Then in the summer of 2017 we noticed she was really struggling with basic decisions. Fortunately we had her DPOA invoked / activated in March 2015 so had been handling her finances since then). She had to call 911 in September 2011 as she was struggling to get out of bed. We determined that she hadn't been eating right, getting enough exercise, etc. even though we had someone in the home three times a week to help her.
During the Fall of 2017 rehab, she was diagnosed with the Vascular Dementia. The doctors told her she needed 24x7 care and of course she refused that. She was living on an island north of Seattle with limited services and no close family. My siblings and I decided that she couldn't go home ever again and live by herself. We tried to get her to consider going to the one assisted living facility on the island but she refused. So my siblings and I decided she needed memory care and needed to be closer to us. We also realized she didn't need skilled nursing so we told her a white lie that she needed to go to another facility for a while before she could go home. I used a senior living service called Clear Path Senior Living Solutions to find an appropriate facility. We only were able to get Mom to go see one facility and we ended up moving Mom there as she kept pushing back so we just had to make a decision in her best interest. She has been there a little over 3 years. She still complains about things there but we have a good rapport with the staff and are pleased with the level of care so far. We know Mom is safe and comfortable but we will never be able to make her happy where ever she is.
This is really hard but it is important to realize we are doing what we need to do for our LO best interests and care. It is not ideal but we can only do our best for them. And it is critical that we take care of ourselves too as this journey is not over with moving them into MC. We still have a role to play to help them through this journey. But it easier knowing that others are helping to take care of our LOs.
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What a great way to get information. I’m new to these forums, but I am a spouse caregiver. My husband was first diagnosed in 2015 with early onset, confirmed in 2017 with tests and MRI. He’s been medicated trying to slow the process all this time. We’ve had a pretty active life up until these last 3 years. We are now at the stage where he is very agitated, repetitive actions and recently had started to be medicated to calm his anxiousness . I am now finally giving in to looking into home health care a couple of hours a week to give me some relief. I do feel very guilty, I have been married to this man for 50 years and we have always cared for each other when necessary. I feel guilty because I get irritated and I want to be happy, and I want to be important to someone. I miss the conversation, the laughs, and the affection. I know I am going to have to make another decision some time in the future as to when to place him in memory care. How do I know when, without guilt without feeling that he might think I am abandoning him? We are at the stage where he can’t converse, I help him dress, and groom himself. I accompany him to the bathroom and guide in cleaning himself. Still able to go to the bathroom but with prompts from me. Sorry….. I’m just in search of anything…0
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For me it was simple, it came down to my inability to care for her. I could not physically get her to the bathroom all the time. And she physically could not get her self there. Her brain decided that she did not know how to walk sometimes.
That is when I knew I could no longer care for her.
My siblings, not so much. I had to threaten an ultimatum to make them take action. They did not want to place my mom. When I countered with you need to make decisions based on moms care needs and not what you want, I was yelled at for always trying to force my decision as right.
Well, it is right. So I went forward with the ultimatum and we placed my mom. My only regret in placing her is we did not do it sooner. I think she would have loved it.
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Both of my parents have Alzheimer’s and I put them in a memory unit Nov 2030. We have a large house and both my husband and I thought we could take care of them. We lasted 2 months. It just wasn’t safe for my parents, it was affecting our marriage, my health-I lost 15#, and I my job was on the line. Plus, I hated my life! My parents think they are in a hotel and really didn’t notice that I was unable to visit them until April when the Covid restrictions lifted in our state. Now we visit them weekly. Still very stressful and I spend most of my time feeling guilty but they are safe. Oh, they are probably in Stage 5. Prayers going your way. This disease affects the entire family, not just the patient.0
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Hi we had to place my Mother in a memory care facility,
she is continent bit needs assistance in the bathroom.
We found the memory care facility was double padding her.
Has anyone else come across this issue?
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We just placed my dad in MC last week. He was in AL since March when he fell again. The last fall was the decision maker for my mom. She just couldn't care for him safely anymore. There were a number of factors for the move from AL to MC for my dad. We got lucky, I think so far, in that the MC has a different approach to caring for their residents than the AL. They do more of the things I thought the AL was going to do but didn't. Now he hasn't been there a full week yet so he's not settled but for the first time I feel a little peace that he is being taken care of the best that can be right now for his needs. I'm still struggling with the guilt so I can't help you there except to let you know you are not alone with that.
The challenge we have is that he wants to move to a place that my mom can also be at but she is still independent and doesn't need much help right now. He misses her which is understandable but she is enjoying living by herself. I've been trying to reassure him that where he is at right now is safe and we are waiting for a two-bedroom place to open up, even though we aren't really looking. I feel bad about the lying in my heart but I know in my head it's okay to say that.
I was glad that I started checking places out as soon as I could. I got to see things I liked and things I didn't. It helped me feel better when the crisis came for us and we had to place him somewhere because I didn't feel like I was at square one. It was more like being at square two.
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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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