One word.... guilt

lmrennert · April 4

We moved mom to Memory care 2 weeks ago. I have 2 brothers and we are all thankfully on the same page. But I am her daughter.... she is my friend. I have talked to her multiple times a day, coordinating who was showing up and holding my breath night after night worried she would walk out her door and get lost. But this guilt placing her is eating me alive. She begs me to just take her home. But when she was home she didn't know where she was. We figured out she thought she was in her childhood home.

I know we made the right decision but my heart is breaking and I cry all the time.

Just Needing to put this somewhere...

Everyone is telling me to stiffen up...its been 2 weeks.

Lynn

easy23 · April 4

I placed my DH 18 months ago and still feel guilty. I wish I could bring him home and take care of him, but the reality is that I can't. It's not safe and now he has progressed to where I can't physically take care of him.

Please try to remember that you did a loving thing by getting your mother the care she needs. You can go back to being her friend…visit her and advocate for her with the staff. You are a good daughter!

emrobin22 · April 4

i just want to offer support. I am in a similar situation as the daughter dealing with my mom’s diagnosis and care. I manage the daily check-ins and schedule with my siblings. She was my best friend for years. I know a move is coming and I am so worried about the same thing. I wish I had words of wisdom or advice. I just wanted to say you are not alone. This is so hard.

April23 · April 4

Oh my two weeks is no time at all, of course you are grieving! I’m so sorry! But it does and will get easier, she will settle and you as a family will adjust. It can take many weeks even months but you (and she) will get there.

Taking her home will not help as you have just realized. Home is a feeling now, not a place. And I agree with the PP, you can let the caregivers provide her care and you can be her daughter, advocate and friend again.

Some might suggest scaling back visits for now if it’s too difficult and letting her adjust to her new surroundings and getting to know her caregivers. When you visit, come with a treat or something from home, photos to look at etc. to give the visit structure. Time your visits at meal or activity time so that you can enjoy a meal or activity with her to help solidify the new routine.

It’s hard and heartbreaking right now. But it will get easier and eventually you will worry less about her. If she could tell you that this is the right thing, she would. Hugs!

ARIL · April 4

My heart goes out to you. You realize that you made the right decision, but it still hurts. 💔

We know this feeling. As others on this forum have said, you are not doing this to her. You’re doing it for her. Placing her somewhere where she will be safe and cared for in ways you could not possibly do yourself – that is the definition of good care on your part.

Even yesterday I wondered if I should quit my job and bring my dad from MC to my home. But I know that would be impossible. I could not stay up 24 hours a day, nor could I physically manage his care at this stage. But I am human and I love my dad. These thoughts and questions still come up unbidden.

I agree with others: Home is a feeling. When my dad asks when he will go home, I say different things, and I have noticed that tone matters as much as content. I say, cheerfully, “I have come to visit you this afternoon! Would you like to take a walk before dinner? [or some other redirection].” Or I say, “When the weather gets better, you can come visit me some afternoon at my home. I live only 3 miles from here.” Or sometimes when I think home means where he lived with his parents when he was a child, I might ask questions about it, about where the house was or what they did or what they ate or who lived nearby. (I know these stories, so I can enter into them: “on the left just past the store, right?”). Or I am briefer and more inaccurate, “We’ll go next weekend.” Sometimes this works. Sometimes it doesn’t. Reducing distress is the main goal. I try to be generally truthful, but the brutal truth is often unkind. When I must choose, I pick kindness over scrupulous accuracy. More and more as the disease progresses—and as my own skills develop.

Sending you a hug.

lmrennert · April 4

https://alzconnected.org/discussion/comment/269559#Comment_269559

Thank you so much! As you have with your mom she was your best friend! We grieve the loss of our mom and

a friend. Thank you for your support❤️

lmrennert · April 4

https://alzconnected.org/discussion/comment/269569#Comment_269569

Thank You... your words are a comfort. I try to deflect all the time and I'm hopeful time will ease her frayed new world.

I so get how much you would love to bring your dad to your home. My husband and I talked about doing the same. But like you it woukd be 7/24. I couldn't do it. I always hear her voice 10 years ago saying... I was not allowed to take her in...that it's too hard and not fair to a marriage. She made me promise…

My thoughts are with you as well!

Apace141 · April 4

I wanted to post something but feel like I am am ungrateful. Mom is in early stages, already in assisted living w memory care option. I am only 3 miles away. I find myself coming home and being really irritated with my own family. It’s like I reserve any impatience with her for them and it stinks. I am daughter and like others here, though not always perfect, mom and I have always been friends and able to laugh together. I feel like I am working against a clock when I am around her and want to soak up everything but at same time it is super draining. I know my situation is a privileged one (she had idea of assisted living near me). I guess just looking for support from other daughters going through this. First time poster.

SusanB-dil · April 4

'Stiffen up'??? No, no, no... that's a very cold thing to say. I'm sorry you are dealing with 'this'. Do take a deep breath and be kind to yourself. It does get better.

**Please do know that you did not place her there, 'this' horrid disease did. **

((Hugs))

ARIL · April 5

https://alzconnected.org/discussion/comment/269590#Comment_269590

We are here for you, and we understand. I have the irritability problem too. It takes a lot of effort (and compartmentalizing) to keep that in check at my home and also at work.

I also know the “yes I know how lucky I am in many ways but it is still hard” feeling. That’s OK. Each of us has our own road to walk. This is a tough journey in the best of cases.

SDianeL · April 5

you did the right thing to keep her safe. When you visit, go at mealtime so she is distracted. Only stay a short period of time. When you leave don’t say goodbye, just quietly slip out and let the caregiver know so they can give her a treat or distract her. For her home is a feeling not a physical place. Give her time and know that she is well cared for. Hugs. 💜

harshedbuzz · April 5

https://alzconnected.org/discussion/comment/269590#Comment_269590

Just an FYI— irritability can be a symptom of depression and/or anxiety.

My mom does not have dementia and lives "independently" in her own home 20 minutes away. Her "independence" is the result of me providing scaffolding and rides to her many appointments. The woman has a least a dozen doctors, "needs" to get her hair cut monthly and do her own food shopping which can take upwards of 2 hours given her refusal to make a list and poor vision.

I found myself getting short with DH is incredibly supportive and gracious about the time I spend away from home and my son who helps with driving to low stakes appointments. I spoke with my PCP about this, and we decided to trial Wellbutrin which has helped a lot.

HB

jen ht · April 5

https://alzconnected.org/discussion/comment/269647#Comment_269647

Oh my this is so relatable, HB. The "independence" due to scaffolding, the many appts, the hair. Yes. I am living this. And that doesn't include the Alzheimer's memory care resident (Dad).

Some days I really feel that I can't keep up or that I'm not doing enough. I know that many here are (and have been) doing so much too. I try to remind myself that we all have our mountain to climb and that I don't need to compare my mountain, etc.

Anyway, I am wearing thin today and it helped to see your wording here.

jht

lilacgirl · April 5

https://alzconnected.org/discussion/75727/one-word-guilt

I hope you take comfort in knowing you are not alone! My mom is moving into AL on April 15. She somewhat willingly agreed to go, but now she is getting cold feet. We were at her house for Easter and to start helping her pack (she lives alone 2.5 hours away and has been becoming increasingly confused/disoriented about things), and today she had a complete meltdown. It was an emotional day for sure, as we took her to her church, which she loves, then met up with one of her friends at lunch, then went to my dad's gravesite. So in the space of one afternoon she was reminded of all the things that she is going to miss. And she has the cutest little home, and to downsize into basically one room is just going to be so painful for her. Plus she is shy and worried about meeting new friends.

So I am feeling this same kind of guilt you are, and I know this is going to be a very, very rough transition. And sometimes I have second thoughts because she seems to be doing good — and then she'll do/say something completely off the wall and I'll remember that she really should not be on her own anymore.

Anyway — I wish I could "stiffen up" but I internalize this all so much and have had to start therapy and anxiety meds for the first time in my life. Hugs to you and to all of us who are going through this very difficult season.

One word.... guilt

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