New to this community and being a caregiver.

Beinsync

I am new to this forum and would like to connect with others that are going through similar circumstances.  I recently became a caregiver for the my sister who has dementia.  She is 15 years older than me and we were never that close and we live in different parts of the country.   For over 20 years she has become increasingly paranoid of different family members. Mainly that they are taking money from her.  Over the years she has alienated herself from several family members because of these false accusations.  My brother and I are her only living members of our immediate family; her husband died 10 years ago and she has no children.  My brother was very close to her and one day she decided he was trying to take money from her along with his 2 daughters. These accusations were of course false but were very hurtful and now she will not talk to him.  Since I am the only family member left that she talks to she asked me several years ago to become her health care advocate and gave me powers of attorney over her health care.  

About a month ago I received a phone call in the middle of the night from Life Alert. She had pressed the alarm and said she was being attacked and people were typing to get rid of her and kick her out of her home.  The police took her to a hospital and had her admitted.  They ran all kinds of tests and she was diagnosed with dementia and I was told she was not safe to return home and live alone. I was able to find her a senior living facility and she was admitted to the memory care unit.  

I was able to get her situated there, gather all the things she needs from her home and set her up to live there indefinitely.  Her lawyer who has power over her estate will be handling the sale of her property and her car.  She doesn’t understand everything that is going on and questions why she can’t go home and driver her car.  

Even though I have support from some of her friends and the staff at the facility along with my husband, this situation has left me overwhelmed and feeling guilty.  I know this will be a lifelong commitment to taking care of her but I feel so alone since I’m the only family member she will talk to. I feel so guilty because I feel solely responsible for putting her in this facility and knowing she will be there for the rest of her life.  It’s a lot for me to accept. 

I just want to know if anyone has experienced anything similar to this situation and how do you deal with the feelings of guilt and being overwhelmed.

sandwichone123

Beinsync, Many of us feel somewhat guilty when our loved one is placed, and it's extremely common that they don't understand why they can't go home, or even that they have a problem at all.

You have stepped up and negotiated with the facility and attorney and done what needs to be done. One thing I've found helpful when guilt rears its ugly head is to remind myself that it's not me that put my LO in this situation, but Alzheimer's. Yes, I do wish my LO were home and healthy, but in the condition he is in, I cannot wish he were home.

LicketyGlitz

In placement, at home, on your last nerve - we all feel guilt, Bein! It's one of dementia's top strategies in the war on your loved one and yourself.

I recommend finding a support group, either in-person locally, or virtually. I believe the Alzheimer's hotline can help you with that, and other options may come up in a Google search. Knowing you are not alone (and trust me YOU AREN'T) can help alleviate some of that, and talking to others who are also living this swinging dementia lifestyle can be a life saver!

But what I even more strongly recommend is having your sister see a geriatric psych doctor. There are several really, really tough dementia manifestations (this is one of them) that can be eased with medication and geri psych doctor's are the experts in this area. The facility may have access to one? Or check with her primary care physician, even if the facility has taken over her medical care, to get her seen. My mom's geri psych turned out to be the most helpful person on her wellness team. When she wasn't sleeping, wanting to kill herself due to depression, or my least favorite - immersed in the rage stage, Dr. Susan was key in helping find meds and dosage amounts/time to give her (and us) some relief.

Your sister will most likely move out of this stage, but until then there may be meds that can soothe the paranoia and anger making life easier on her and all the rest of 'ya.

Good luck to you and your family!