Moved mom into AL yesterday - hardest thing I have ever done

virgil_sf

I wanted to share my story, one to get comments/advice, and two hopefully someone else experiencing the same thing reads and get some comfort that someone else is going through this.

My mother contracted melanoma about 10 years ago.  At the time, we were told she had 1-2 years to leave.  She went through surgeries to remove tumors (1 arm, 1 leg, and 3 brain surgeries).  The brain surgeries seem to have caught up with her and she now has the onset of dementia.  It started about a year ago(June 2021), she had a seizure while we were on a family vacation.  Since then, she has required more and more help.  

Starting in January of 2022, we had in home care givers daily, M-F.  My sister took care of her at night and weekends.  It was really hard on my sister.  I have come out several times this year(on my 5th trip now).  The surgeon did go in, with a small pin hole, to try to improve some swelling and scar tissue, and also take a sample to see if there is a tumor.  The result came back negative, which was great, but at that point my mother started refusing treatment and was really bad in the hospital.  

In April 2022, we started having night time assistant, and in the last month, weekends.  My mom has to have someone 24x7.  We are scared she might fall, get confused and do something with the stove, microwave, etc.  Her long term memory is still good.  Short term, she can remember something for about 3 minutes.  She is very aggressive with my sister, and says really horrible things to her, and now to me as well.  "you don't like me anymore", "you are a terrible aunt to your niece", etc.  

In June/July 2022, my sister and I started looking for a place for mom.  We tried a couple larger places, and even took mom to visit, but didn't seem like she would get the attention she needed.  We found a really nice group home, close to my sister, and even took my mom there to visit.

When mom was visiting places, she was sweet as a peach. She was also very nice to her care givers.  Rarely would we get a report of her being 'bad', and when she was, that might involve raising her voice.  She would still argue with my sister, hit her, she even tried to bite my sister at least once(I am not sure my sister told me all the times that happened).

We took mom yesterday to the group home.  It was the hardest thing I have ever done.  As I type this, I am holding back tears.  When we were there my mom said she was at the place six months ago, and she didn't like the people. She didn't like 'how they did things' and she wasn't going to stay there. Luckily my Aunt and Uncle (her brother and sister) were there with my sister and I to help talk to her.  When we left it didn't matter.  She hung on to me, told me I could leave her there.  "Don't you dare leave me here", I think I blocked out other things she said.

I am here (in Phoenix, AZ, came in from California) until Thursday to help with the transition, but the owner/operator of the facility suggested we don't come see her this week and try to let her settle in.  I feel terrible.  I feel guilty.  I feel sad.  I woke up last night worried about her.  I am seeing a therapist, started a few weeks ago, and that helps.  I highly recommend it.  I am try to get my sister to do the same, but she says she 'talks to her friends about it sometimes'.  I don't think thats enough, and will continue to try to get her to see someone.

This is the hardest thing I have ever done in my entire life.  I watched my father die of lung cancer.  This is harder.  Please talk to people.  Share your stories.  Seek help.  You aren't meant to care for a loved with dementia(thats my opinion).  I have not been able to be a proper father, husband, co worker or take care of my self because of this past year.  I am going to try to correct that.

Ed1937

Virgil, this disease is nothing short of horrible. I know this is hard. I had a very hard time making a call like that for my wife. Once I made the decision it became less stressful. I hope you're finding the same thing. It's really hard when they say things to make you feel like you're doing something that is not in their best interest, even though we know better. It still hurts.

Hopefully it won't be long before she starts to get involved with other people there. Keep us posted.

oehlsena

I think it is good of you to try to get your sister to talk to a therapist about it since that is so much to handle. I just wanted to write that if she thinks that talking to her friends about it is enough for her, that she may not take kindly to suggestions that she needs more help. I know for sure that I am going to need therapeutic help after my mom dies, if not before.

MN Chickadee

Thank you for sharing your story. Moving my mother to memory care was indeed the hardest thing I have ever done. I remember thinking I would take a couple more un-medicated child birth experiences over that pain I felt over the move. It was a dark time for all of us. The un-deserved guilt, the worry, the grief. We got through it and mom settled in and it all worked out but I would say the days leading up to the move and the  month after were the worst of my life. I hope in a couple months you are able to come back and have some nice moments with your mom and good quality visits.

quartlow2

It was SO heartbreaking for us as well. Mom needed MC and dad needed AL. Dad ended up moving in with her. I can't imagine going through that without him. It was very hard on him but he at least got help taking care of her. She was worse than he told us. He did so good to take care of her the best he could. But his health was failing too  They have both passed now. He outlived her. That was his goal. But watching him grieve was just as heartbreaking as placing mom in MC.. I miss them dearly.

dayn2nite2

The day I placed my mother was worse than the day she died.  Truly.  Please follow the instructions of the care home regarding visiting.

I wouldn't push your sister to see a therapist.  She's doing what works for her right now.  If you start getting the feeling that she's depressed and it's interfering with her life in a big way, you can visit her and talk to her about that, but right now, let her be supported by friends.

May flowers

Placing my FIL in memory care last year was heartbreaking and we felt so guilty. He settled in and ended up doing better there than at our home, even made some friends. He’s back home now due to a fall and other issues, but we would do it again.

Hang in there, she will likely adjust and do just fine. You are still caring for her, just in a different way. You and you sister will find there is still a lot of overseeing her care, even at the facility.

pianojbar

I’m so sorry you’re going through this. My brother & I had to put our mother in a nursing home almost 4 years ago. We tried assisted living, but that just wasn’t enough. It was heartbreaking & we dealt with much guilt. The beginning of this journey was by far the hardest, seeing someone you love slowly transform into someone you don’t know. As time goes by, we can deal with things a bit more easily, but it’s still tough. I used to attend an in person support group, but it fell apart. So after all this time, I’m reaching out again. I need this support group. We all have something in common.

WendieN

I just joined this forum and saw your post. I hope it is going better for your mom now and for you as well.  I had to make the same difficult decision in putting my mom into an AL facility against her will.  It was absolutely the hardest decision I have ever had to make. She is in a wonderful facility and being very well cared for.  But…she is still VERY angry at me (4.5 months later).  She wants to go home, but doesn’t understand how impaired she is from her Alzheimer’s.  

Anyways, I feel for you and your family as I know how devastating this whole process can be on everyone involved.  I hope that the transition has gone well.  Make sure to take care of YOU.

Gig Harbor

I placed my husband two months ago. I told him I had to have surgery and would then be in rehab for a total time of at least three weeks. He wanted to stay home alone but I joked with him that I did ever for him (no joke) and there were great people to care for him. After three weeks he was very settled and had made friends and was enjoying all the activities. I felt guilty but I realized that would have been the scenario if I had really been sick or had surgery. When I visit him now he never asks to leave and when it is time for me to leave I simply say I am going to work. He pretty much lives in the moment and does not look forward or back so it is easy for him to be happy. He is more engaged because there are activities planned from 10-3 every day and he takes part in a lot of them. At home we would walk each day but while I was taking care of the house, yard and meals he watched a lot of TV.

Appy

I don't doubt for a second that this was very hard for you all. Even when you tell yourself that you are doing what is best and most loving for your LO it's still hard. 

My Mom lives in a small home across the driveway from us (she is 96) and has 24/7 care. On Friday the Hospice nurse came to see us and get Mom set up with Hospice. As soon as I introduced her to Mom I could see by the look on her face she was getting mad. I explained to her that in order to keep her here in her home until Jesus calls her home I was bringing in some help (I have yet to use the word Hospice with her) to provide care that her caregivers and I can't. Such as a Dr that will come to the house for her. She was rude and surly with the Nurse and after we left she told her caregiver that she was sure I was trying to kill her and my brother. The caregiver told her that I love her very much and have worked hard over the past five years to provide good care for her. Her reply was, "Yeah, right". 

It's good you are talking to a professional and I hope they will be able to help you and put your mind at ease. It's best to let your sister handle things her own way. We're all different and thus different things work. I have a strong group of ladies from my church and my friends who are always available to me and they have helped me deal with this so much. My faith has also made a huge difference. But that's me. 

virgil_sf

Mom has been in for a month now.  After a few days, she was doing 'ok', but she has gotten worse.  Only sleeps from about 7pm - midnight, then they need someone in her room with her or she starts screaming and being very agitated.  We are trying different medicines (she is on Lamotrigine, Zoloft and Trazadone now).  Going to the neurologist this morning to see what else we might be able to do.  She is pretty 'ok' in the mornings according to the caregivers, afternoons starts getting worse.  This is all pretty much the same as when she was home, though we could usually get her to go back to sleep until 5am or so.  The home said the neuro might recommend she go into a facility for them to work out her meds.  Says it could take 1-2 weeks and that they have had folks in the facility do that before.  Does anyone have experience with that?  I'll see what the neuro says today.  Feeling nervous, scared, frustrated.

virgil_sf

We are adding Depakote and Quetiapine/Seroquel to her list of meds now.  Hoping that helps.  If anyone has any experience on more of a 'skilled nursing'/'rehabilitation' place that might offer in patient for 1-2 weeks to figure out her meds, let me know.

MN Chickadee

It sounds like it is time to tinker with that class of drugs. I see Seroquel mentioned on these boards very often, it seems many PWD take it and for some is really useful and helpful. Is the facility referring to a senior behavioral health facility? I'm not familiar with a "skilled nursing/rehab" place accepting someone just for psychiatry care but perhaps it is done in your area. Definitely something to ask about and get more info. A senior behavioral health unit, or sometimes called a geriatric psych unit, is a facility designed for what you are talking about - getting extreme behaviors under control and hopefully making quality of life better and care possible.  They are staffed by doctors and nurses who specialize in dementia and they keep a person at least a couple weeks to find the right meds and then they are discharged back to their home, former facility, or new long term care facility depending on the situation.  I personally think it's good when a facility suggests this and will take the person back after the things they can't manage are under control. Some facilities will just kick the person out, I take this as a sign they are going to work with you and find solutions. My mother's facility would suggest this when someone was getting aggressive or unmanageable and I know numerous people went to an in-patient setting and then came back with new drugs and successfully immersed back into their routine at the MC. 

Is there a geriatric psych professional who does rounds at her current place? You definitely want a dementia specialist working on this one way or another.