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

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))

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.

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.

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.

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.

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

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.

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.

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.

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.

Oh, I have felt and feel everyone of those. I also feel that I don't have a mom I can call, rely on, vent to, etc. That was the hardest one for me. Mom is in a wonderful memory care facility now and I've been taken care of her since Dad passed (suddenly) in 2011. It's been a long road to where we are now. Mom no longer speaks very much and when she does, it doesn't make much sense. But I continue to visit, usually for an hour as I can't handle much more than that. I try to be happy and upbeat and you wouldn't believe some of the goofy things I do and say just to get her to smile. Those moments are priceless.

Quick story - I recently purchased some new make-up for myself and tried my new look, got dressed and went to visit mom. As I kissed her hello, she looked up and said, "how come you look so good" which was probably supposed to be, "don't you look nice." It was adorable. She smiled and then took a nap. It's these moments where a glimmer of recognition comes through that get me through.

Some days I don't even know if she knows who I am. She never speaks my name, but did recently when someone else said hello to her, acknowledge that I am her daughter. But she will say I love you too when I tell her I love her! I think she just knows that I am someone important to her.

Mom was always proud of her role as a wife and her home was always spotless with a meal on the table within what seemed like minutes. When it's time for me to leave, I often tell her that I need to go do laundry, or go get dinner started, or go to the grocery store. She accepts this without tears. My brother on the other hand hasn't caught on to this trick and every time he leaves, she cries.

So it's the little things. Do what you have to do to get through. Please know, we are not alone.... much love,

Maria

Hi,
In so many ways this sounds like what I’m feeling. My mom is not however, in a care place. She has slight dementia and has pulled away from me and she too, was my best friend. I’ve tried everything by ( even like you we live in same city) email snoop hi cards, etc but she doesn’t respond to them anymore. She still uses computer but like you it’s grief and like you, I don’t have siblings that will call or help! When my dad was sick, I was in college and all, yet at that time I didn’t live close..my brothers would call me to see how my dad was and they lived right next to him! I did go to a counselor but he didn’t really know what to say except ... I have to draw emotional boundaries, find a friend that’s dealing / dealt with it and quit taking what she does personal! Well that’s hard to do. I asked him for tools to help... he was speechless. It sounds like you miss the friendship and it’s very hard. Please know it’s not you. I’m in the same boat but I don’t have my dad. My siblings don’t reach out either. They just think their sister ( me) will take care of it all. Yes, I get exhausted but I think mine is more sorrow and grief. My mom is alive yet she acts like she doesn’t love me.. she’s stopped ending hugging me. Support group might help and I’m new on here, but the 1 support group meets when I can’t go.
Too, I hope your friends understand. When I broke the silence about my mom, my friends just fell off the planet. I learned they were just in touch for them. Advice. I couldn’t give it anymore for their lives on boyfriends, etc. I needed someone to actually listen to me.
Yes I pray you find some peace. When I read yours I thought Gosh I so know how you feel. I’m praying we both find friends on here that cant fix but Just being there and also understanding them too. I’m here for you if you want to reach out. God bless!

I moved my mom to memory care about 8 months ago. She is thriving. For me, it was a 10 year battle to try to get her help, etc. I wasn't caring for her full time and was struggling to manage long distance (no help from my sib either).

For me it was a huge relief and I felt a huge ton lifted off my shoulders -- but the guilt of having to lie about this being her "full time residence" and her house sold, etc. is the hard part.

I liken all of the emotions and conflicts we feel to PTSD. You are suffering even more from PTSD because caregiving was your full time job for so long. You are grateful to give it up -- but it is also part of who you became. You will need to fill that void and come to terms to relax and remember who you were BEFORE the caregiving.

Likewise you will need to come to terms with new reality and relationships with parents once they are in memory care. One thing I've learned and remind myself at every visit - is that each day is a "restart" for your loved one. They have memories far back -- enjoy that; enjoy reminiscing...but there is no short term memory or gratefulness or remembrance of what you've done for them for the last several years. My mom remembers none of that. I think the move to memory care was traumatic and it reset her brain back to years before when she was perfectly managing her home and self -- not anything with when she needed help and I stepped in.

Its a grieving process; though in my case a huge relief to know she is now safe, happy, fed and wakes up to nearby activities and caregivers who "meet her where she is emotionally and cognitively" with no background of who she was -- and therefore they can treat her with respect and dignity for who she is at this moment.

I find solace in that.

I lived with my mom for 5-1/2 years as her dementia slowly took over and then she could no longer walk. I couldn't get her in the shower for months and decided a care home was better than what I was doing. At first you feel guilty. Or that you abandoned your parent. But when I step back and look at the big picture, sometimes it was just ME that had a hard time letting go. Because I cared for her for so long. She has new "friends" now, eats in a group setting, a lot of entertainment at the care home, exercise, etc. So, all in all, mom is better off in a care home then she was at her own home the last year. I visit her as much as I can and I can go back to being her daughter now and not her caregiver. You'll get through it!!! And I commend you for caring for them.

I can certainly empathize with you since it sounds like my situation...my mother & I took care of my father when he got sick w no help from sibling...he passed away ...& now 25 yrs later my mother has dementia & was in SNF for 10 months after a fall, fracture & emergency surgery. I took her home in March when she turned 90..I have aides helping every day or else Id go crazy...dementia not easy to deal with...& she don’t walk anymore either....but you made right decision...it was best since you were not physically or emotionally able to do it anymore without getting sick yourself...bless you & know that your parents are in good hands...you can still be their advocate & check on them...talk to & get to know nursing staff, CNAs that care for them. You’re still caring for them but in a different way..

Katiekay,
I forgot one emotion-LOSS.

Every evening I would call my mom to check on her. We were never "best buddies" but we chit-chatted real well. After my 5 minute call, I was satisfied that she was OK. (She lived alone.)  I was living in Puerto Vallarta, Mexico, and am the only kid, so I wanted some piece of mind.

When I went to visit her at Christmas I found out she had dementia!! Surprise! How did I miss that over the phone? I later found out that Alzheimer's patients can chit-chat to make you believe that they are mentally OK. She sure fooled me!  I moved her from the apartment she lived in for 50 years to Assisted Living then into Memory Care.

Long story short, I feel like "something's missing" around dinner time. For a long time, I couldn't put my finger on it. It was an "emptiness" but I couldn't figure out why. Like I should be "doing" something but what? (Sounds like I'm "sundowning", right? ;)

One day it dawned on me.... I had been calling Mom at that time every day for years and now she's in the Memory Care facility. My routine was disrupted. THAT was what I was programmed to do and now she doesn't know who I am.

She still smiles at me (most days) when I visit but our "nightly checks" are over.
Gotta' go, the tears are coming....

As our parents age We are all programmed to try and keep them happy and to fix everything. My folks are at the point where I can’t fix it anymore or make them happy. I have to remind myself all day long of this sad fact. They are in care and safe which is a great relief.

But I had to leave mom sniffling and confused Friday night at the AL. There were no comforting words that would make her better. I’m as tough as the next guy but it’s hard to shake it off and get used this aspect of our new reality.

For me, it came when I was cleaning out mother's 2 bedroom unit in the downtown ALF she was in before being hospitalized. Initially we have discussed with the geri psych about the possibility of her returning to this very nice unit, but as mother continued to resist treatment, and they completed all their assessments. he recommended that we close it down, as she needed a placement which offered more care. As I was packing up, I had to face that this lifestyle was over for her. She always kept a beautiful place -artwork, antiques, good furniture, and everything in it's place. There was no one around with obvious dementia, it was more upscale seniors' apartments, with a couple of floors above that offered more care when needed, but, in her area, you never saw those patients. It was the end of an era for her and that brought feelings of loss. Her next placement, once she had accepted treatment. was a facility where more residents than not used walkers, many looked vacant, and so on. It was a big change and I felt it for me and for her.

Thank you for this post. We are at this place in which my finances have run out and I need to find work, which will limit how much time I can give my father. He's lived alone in a senior apartment for 14 years since my mother passed and oh, how much I have missed my mother. So has he, although he doesn't always remember details about her. She was my best friend and I always expected to care for her when Dad passed but she went first. Now I am watching the other parent fade away and wondering what the heck I am going to do when he is gone. I have gotten so used to this situation and to dealing with his needs that I don't feel I am good at anything else. It's become my identity. Not sure I can go back to who I was. Meanwhile, friends have died or moved on and I no longer feel connected to my siblings. It's scary. I hope to high heaven that I don't lose my mind because there isn't a safety net for me. So Dad and I are both resisting the final move. I'm scared that in his confusion I will lose the rest of him.

This is the very reason I am making myself physically and mentally miserable trying to still (after 7 years) care for my 97 year old Mum at home. I have reached the point when for many reasons mostly health, It is time to make a decision about long term care but I can't seem to do it. I just drag myself through another day. I find myself not being as patient or pleasent with Mum as I should be because I'm so burned out and don't feel well myself. Yet, I fear that I won't be able to deal with the guilt of having to give up and have her live in a Nursing Home. It's truly a no win situation. Mum has never been a happy person, so she won't be happy anywhere and I have literally spent my whole life trying to make her happy because I love her so much, at the cost of a marriage and some friends who didn't understand my devotion to her. Luckily my husband of 33 years understands but it's taking it's toll on us. I guess those of us that love so much, also hurt a lot too. I wish I had the answer for you. Stay strong and God Bless you.

God bless you for all you have done and continue to do for your parents. They are truly blessed to have such a loving, caring daughter.

Your journey is a hard one, there is no going back to who you used to be before, the caregiving journey changes us in so many ways. It is now time for you to plan your future, what gives you a reason to get up in the morning, what brings you joy, all while continuing the long goodbye that dementia causes.

Let yourself feel and process all of your emotions, your reality is hugely changed and change takes time to adapt, loss takes time to adapt and grief takes time to process.

Be kind and patient with yourself while you travel this new path on your journey. Be understanding and caring to yourself, you have a giant hole that needs to fill in and readjust all things you and your story. It takes all of the above and more to get through this hard trial.

You named all of the things your BFF mom would never do again with you, maybe, when you need her in that way, you can prepare a nice meal and go to mom, talk to her and share your struggles, she may not be able to talk to you or share her wisdom but this might help you transition and she is still your loving mom even if that d@&n disease has hidden her from your site.

HUGS 2 U!!

I have gone through a MAJOR emotional tsunami and it came on suddenly, revolving around my mom going into AL.

All I can say is my emotions were very very confused (still are) but I didn’t feel guilty. At the time my psyche flew apart I realized logically that the best course for everyone, especially Mom, was the course we had set up and it has been better for her as she needed a lot of help she’d hide from us.

I’ve had a crippling anger at my dad but I’m growing easier with that. People usually don’t change so it’s up to me to deal with dad’s narcissistic behavior.

Rage was an unexpected emotion to roar to the forefront at a time like your mom entering AL.

But our feelings are temporary. They’ll change in however much time it takes. I can’t tell you how much better I’ve felt after drawing strict boundaries with my dad.

Mom is doing well in her AL. So my world is like that today.

I was in the same boat as you. (My father passed, though, so he's not around.) However, my mom showed signs of dementia. I moved in with her and cared for her for 5-1/2 years. I slowly watched the Alzheimer's progress. I actually had her diagnosed. When I could no longer get her in the shower, and then she became wheelchair bound, my siblings and I moved her to a Memory Care facility. It took me about one year to detox from full time care giving. I don't live too far from the Memory Care Home, though. I also feel "guilty" she is in the home, especially when it is time to leave and she wants to come with me. But, I have to look at the positives: (1) She is being bathed and fed three square meals a day. More time for me to have "fun" with mom. (2) More activities for her, instead of us just watching t.v., which is healthier for mom. In regards to "things will never be the same" -- that is true. However, I have shifted my mind towards making NEW memories. Mom and I attend most musical events at the care home together. We enjoy it and have fun. Mom and I play Bingo on certain days. Mom and I go to Catholic "services" every Thursday morning. Well, you get the idea. I have substituted our togetherness with NEW things, and it will be all right. See what you can do with your parents, together, at the home. Please take care. *Sue