Parents in memory care and unexpected emotions... can anyone relate?

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My parents moved to memory care 6 months ago. I had been caring for them for about 5 years in varying degrees. First it was me and my mom caring for my Dad.. then my mom started showing signs of dementia about 2 years ago. The last 5 years have been very hard and I have been going it alone .. no help from siblings.


I used to dream of when they were in a facility so everything wouldn't be on me and I knew the time was coming when I couldn't continue to provide all the care they needed (even with paid caregivers).


Well... they are in a very nice memory care now and I am just not feeling the relief that I thought I would feel (not yet anyway). It may be because I am just so completely exhausted that it will take months or maybe even years to recover.


The emotion I didn't expect was the huge wave of grief.. especially for my mom. My mom was my best friend and my confidant. I haven't felt the full impact of her dementia until just recently when she moved to memory care.... I am realizing that things will never be the same.. that she will never be there for me or be able to cook a meal or have long conversations with me. Maybe now i have more time for the grief to take over... maybe i just didnt process it before since I was so busy with the day to day.


Of course the other feeling is a huge sense of guilt.. especially when I have to leave them after a visit. My dad always thinks he will be leaving with me. Sometimes they like the place and sometimes they complain the entire time I am there... neither is aware they have dementia.


There is also the dashed hope that my siblings would come around more .. or maybe care more once I got them into a facility (ensuring they would not have to be involved).. however that hasn't changed at all.


Anyway.. I was just wondering if anyone else who moved there parents to a memory care or a nursing home had any unexpected feelings crop up. I sure need to figure out how to live my life away from my parents.. but since I have been focusing on them for so long.. it is much more challenging than it sounds.

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Katiekay,

I can certainly relate! Watching my parents' decline was heart breaking. Two strong, independent individuals reduced to shells of themselves. Daddy passed, not unexpectedly, a year ago. Just prior to his death, the family placed Mom in memory care. At the time, I think I felt guilt for feeling relieved. The last few years, Mom had been a terror of paranoia and irrational behavior; she refused to move in with any of us, which I see now would have been a terrible mistake anyway. Now, in memory care, her behavior is worse than ever, but she is being kindly and properly cared for. I can sleep at night.

Our relationship is complicated: I've described my feelings toward my mom often on this forum and won't repeat them; I've gone low contact in the interest of self-preservation. Whatever fault I might find in how she raised me, she is still my mother. Narcissism and abusive behavior have driven away most family members. There are only 2 family members who will go see her now, my sister and myself. She has a handful of regular visitors outside the family.

Sometimes I'll walk into MC unannounced and see her seated in the dining area with the other residents. She doesn't see me. She looks so frail, so vulnerable. She seems out of place, because the woman she used to be was anything but frail or vulnerable. I feel this horrible pang of guilt because I placed her there! And yet, my rational mind tells me this is the best care option we have. It's affordable. It's clean. Her room is cozy. The surroundings are gorgeous. The staff are wonderful. But Mom is miserable and quite vocal about it. I can't hold myself responsible for her chronic dissatisfaction.

Sometimes at random moments I have the most gut-wrenching compassion for Mom. Like witnessing her mini-mental exam. She doesn't know what month it is, the city she's in. Her clock face makes no sense. She knows she's doing poorly. Her hands shake as she grabs at her collar.

I am learning to detach. It gets easier and easier.

You have been a good daughter: you cared for your parents for 5 years. Just because you placed your parents in MC doesn't mean you're a "bad" daughter. If anything, it means you are a wonderful, caring daughter because you have seen to their needs, comfort, and safety, likely much better than you could have in a home setting. As your parents continue to decline, their needs will grow, and it will "take a village" for their care. There are some who decided to care for their parents at home, and they too, do a good job; but they struggle to meet their own needs and those of spouse and children. They do the work of 10 people. But it's mentally and physically exhausting.

There's not much you can do about siblings who, for their own reasons choose not to visit your parents. You can't be responsible for or make up for their decision. Neither can you be responsible for your parents' dissatisfaction for their living arrangements, their anger, their confusion, their anguish at the loss of control.

After 5 years, seeing to their needs is ingrained in your mind. Now it's time to let memory care take care of that. You provide the love, and let go. Rediscover the person you were before your parents' decline: your own passions, your own interests. It could take months before you make that connection. Give yourself time.

This is a terrible disease. You're a good daughter. Be kind to yourself.
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Reply to CantDance
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My first emotion was RELIEF from worrying about her. Mom had been living in an assisted senior apartment complex. She declined mentally from stage 3 to stage 5 Alzheimer's and needed more and more observation and help. She had lived alone for 30 years previously and was used to having nice things, getting whatever she wanted and was very concerned about how she looked.

The next emotion was GUILT. I couldn't help but feel as though I was "condemning" her to a memory care facility. She would never get better and I could no longer communicate with her.

That emotion turned into SADNESS, a once well spoken woman was loosing her mind and I couldn't do anything about it.

Followed by DEPRESSION-how hard it is to see the shell of the person I once knew. Sometimes I have tears after I finish our visits.

FAILING is also part of my struggle, as my mother would have been appalled to live in the place she's in with older furniture in an older building. The care is excellent and they are very caring and patient with her rude ways. But how bad I feel that it can't be the posh, luxurious place that she would have expected.

Anxiety is ever present in the "wait" for the dredded phone call. I have to be realistic, she's 95, there won't be too many more birthdays.

Lastly, GRIEF, in that this has been a horrible, long, dignity robbing illness. I grieve that she had to suffer this way and for me, who had to watch it happen.

Way too many emotions to easily process. I think that's why we caregivers are so tired.
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Reply to SueC1957
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Katie,
Yes I can relate. I did not feel the rush of relief I thought I would after Mom was placed after an 18 month struggle to make it happen. I felt awful.

But things were better. Mom was safe and well taken care of. I was not on 24 hour call.

No, my sister didnt pitch in any more but did visit Mom occasionally.

It takes a while for some of us to wrap our heads around these series of events involving our Elders. Sounds like you were pretty exhausted. Here’s hoping you come to grips with you parents and your new normal. Be kind to yourself!
((Hugs))
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Reply to lizzywho61
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The four of us sisters cared for our mother, sharing decision-making and tasks. When she could no longer live on her own, one sister took her in. The rest of us were thrilled and grateful and provided respite on a regular basis. Mom continued to decline and after about a year she was beyond the point where she could be cared for safely in a private home. As soon as the 24-hour care sister acknowledged that, the rest of us flew into action and found a suitable nursing home. Even though we all agreed that this was best, the 24 hour sister was devastated. She felt like a failure. She second-guessed herself. She felt guilty. Relief came later, but the first few months she was an emotional basket case. Did she do the right thing?

I don't think the other 3 of us felt guilt. I sure didn't. I felt relief for the 24 hour sis -- I certainly didn't want to see her burned out. What I felt that I would no longer be providing respite was not so much relief as a loss. I liked that time I spent with Mom.

We'd all been losing our mother for several years. This two-and-a-half years she had in the nursing home seemed like a bonus. We had her for longer and she was safe and actually content. (She lived to age 96.)

I hope you can get past the guilt quickly. I understand it, but it just gets in the way of enjoying what you can. You DID NOT CAUSE the dementia. And that is what is behind all of this loss.

Keep in touch and let us know how your feelings evolve.
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Reply to jeannegibbs
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You are not alone

It's been two years since I moved mom to memory care - I hate that she's there and I hate that I'm the one who put her there

She is 94 no longer mobile and is moved with a hoyer lift - the purée is often served cold

She has been hospitalized three times since summer and siblings haven't seen her since Labor Day - her birthday

Generally residents' loved ones start to detach during the first year

One loving husband is there everyday to lunch with his wife who is non verbal but she smiles and he rubs her shoulders

Last night mom was restless and couldn't fall back to sleep after her diaper was changed - she kept saying please and help me and asking her what she needed only resulted in her replying, you
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Reply to MsMadge
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I moved my folks into AL about 2 months ago. Dad has fairly advanced dementia and will probably move to memory care so. Mom has mild dementia with serious mobility issues.

Yes it is a mixed bag of emotions. I think your reaction is somewhat common. I have a huge sense of relief that they are now safe and cared for after years of being the sole and long distance caregiver.

I’m home now working on the house. Big mess of course. I don’t enjoy visits. I have to constantly distract and divert Dad and mom has always battled depression. About 2 hours is all I visit. I don’t feel too guilty as my presence seems to remind them of all things HOME. They are beginning to adjust but it was tough.  Even short visits are exhausting for me.

You’ll get many more comments. My elder journey has been easy compared to many. Good luck to you.
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Reply to Windyridge
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Katie, there really is no other way. No disrespect to all those that live with and care for parents, can’t imagine, but I spent about 2 hours with my folks tonight. Dinner was me, parents, and two other sweet, demented ladies. So I go into HAPPY GEAR, trying to make conversation, one lady is quite deaf, and trying to guide conversation a bit and be all smiley, have a good time, isn’t this fun.....

It’s exhausting, emotionally and physically. My folks are declining every day. It’s hard to watch. But they’re adjusting and happy, sort of......

Mom gets a little miffed that I leave so soon, but she forgets pretty quickly and is happy to see me the next day. Plus, their room is about 80 degrees. About an hour is all I can do. After I leave it takes about 3 hours to come down to a normal core body temp.
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Reply to Windyridge
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Def been thru all of it, and just when I think I'm good to go, one of them (guilt, sadness, anger) hits me again.
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Reply to talkey
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Thank you so much to all the other caregivers who have posted. KateyKay, I believe everything you are feeling is something we have all felt at various times. SueC, your post brought to mind the 7 stages of grieving. It seems the emotions don’t have a clear progression - they can be revisited often depending on what is going on with our LO.
I just got word that my father, will join my mother as her roomate in the nursing home where she has resided for 6 months. This has been a long journey for me and my siblings, as well as my parents, and I know it will be even longer as they are not that old(86 and 87). My siblings and I began overseeing their home, health, and finances over 16 years ago, with 24/7 care for the last 7 or 8 years. Even though this move was necessary, it has been hard to let go of the idea that we would be able to care for them until the end. We will, just in a different way. We will be decorating their room to make it as homey as possible. My father told me as I was getting him into bed a few days ago that he was worried about what it would be like. I told him that I understood his concerns, that it was going to be a big change. I asked him to just trust us, like he has for the past many years. That we would still be taking care of both of them, but we had more help now. He said “Well, I don’t look forward to moving, but I’ll be with Etna (my mother).
I was with my daughter when we received the group text sent out by my brother about my dad. She read it aloud from her phone and I went through several feelings and my face crumpled with emotions. Then my daughter announced, “Well, Granny’s got her man now!” And I felt better.
What I have learned in the short time that my mother has been in a nursing home is that I have come to expect that my emotions will be all over the place while I am there and especially when I leave (those are some of the loneliest car rides home). I have left depressed, sad, relieved, happy, guilty, and a few times filled with joy at the little vignettes of love and caring I have witnessed between the residents, or the residents and the staff. Knowing that my emotions are subject to so much change concerning my parents helps me to withstand the low points.
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Reply to Treeartist
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Thanks for all the great comments! Sounds like others experience mixed emotions as well. The whole situation is hard all the way around. It is sad to see once vital parents slowly decline.

I know what you guys mean about not always enjoying visits. I do have some nice moments with them still but Sometimes I just cant wait to get out of there. Cant really have very involved conversations so basically we just talk about the here and now and they will repeat the same questions over and over and over . Eventually my Dad will ask when he will be going home..if I stay long enough.

Windyridge.. 2 hours is a long visit with parents who both have dementia. I still stay 2 plus hours sometimes mostly because I'm not good at leaving. My mom is in pretty good physical condition so she will follow me out the door..if she can .. so I have to leave strategically.

The other family members don't seem to visit much and when they do are there between 30 minutes and an hour..so i'm probably the one that spends the most time there. Once a month they have family night in the evenings.. so tomorrow night is family night.. seems like all family usually show up for that.

Visits are a mixed bag... sometimes if I stay just the right amount of time I can leave on an upbeat note.. and I don't leave and feel down the rest of the day. Sometimes I literally have to run to the door before my mom catches up to me.. ugh.

When my parents started their decline.. I lost any relationship with my siblings..so I really am pretty much out of family .. for the first time in my life.. I really need to start my life over in some ways. I always thought that my siblings would pull together in bad times..but in the last 5 years i see that is never going to happen.

Still waiting for the RELIEF part of it.. hopefully I can figure it all out. I know there are still some hard days ahead... I'm just going to take it one day at a time.

I agree Sue .. the emotion of it does wear you out.. probably why I am so exhausted still. Its an ongoing grieving.. even though they are still here. The day I moved them into memory care was probably one of the hardest days of my life... i literally sat and did nothing all that weekend.. I was just worn out emotionally.
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