My story, please read

Jolove1967

hello. My father passed away in July 2023. We discussed before my father passed that my mom would have to come live with me. She was not to live alone. Mom had mild dementia at the time. The night my father passed. Mom came with me and stayed with me for 2.5 years. My first year with was cook or do the things she used to do, but we followed a very strict routine. The second year got rough but I continued with the strict routine. The last four months was in my care. Her behaviors started to change. She started to refuse medication. She started to not eat a lot. She needed help with everything. And I am sure you know what I mean when I say that. There were many nights. We were awake while she did dementia stuff. I only got angry at her one time. I knew it was the disease and I did my very best to have as much patience as I could. It started to get to be too much my health. I was having diarrhea constantly. My ears were ringing. My heart was racing. I was on full alert pretty much 24 seven with not much sleep. I ended up having a mental breakdown. My mother is my best friend. She always will be, but this disease took a toll on my system. I am also going through per menopause. So on January 2, my mother had a regular wellness visit and my goal was to get her to the hospital. I thought the hospital will work with me on getting her in long-term care. Boy was I wrong. My mother was told she would need to go to a geriatric psychiatric facility for an inpatient evaluation. My mother was never properly diagnosed with dementia only by her regular doctor. She never had a brain scan. She was always scared to go, and I would make appointments for her in the previous years and she would call and cancel them. Anyway, back up to the emergency room story. So they told me she needed to be impatient for an evaluation at a psychiatric geriatric facility. They psych eval. I had no idea what this was but I was down for whatever would get the help. They said that this place will stabilize her on medication and then we can get her into long-term care. OK great I thought. Well on the fourth day in the emergency room I watched my mother from her baseline. It broke my heart, but I still thought hey we’re get her the help. I’m the fourth day they tell me the social workers that is, that doesn’t need the evaluation now and that we can get her into a rehab or another facility. I couldn’t believe it and I didn’t understand but I a good thing then. So we got her into a rehab private pay mind you. The rehab could not handle my mother. My brother and I had to go up there and wheel her around while she yelled. I had to go up there and give her her medication at 11 o’clock at night. That same night I fell from exhaustion inside this rehab facility. They would call us and tell us if we get up there. They would my mother back to the emergency room. After and helping the rehab on day six my mother was sent back to the emergency room. This time my mom had kidney damage. My mother was refusing to eat and drink at the rehab facility as well. I know they cannot force this. My mom was admitted to the hospital. They got her medically healthy again my mom had a UTI during this time as well. So the got her healthy and they said now she needs the geriatric psychiatric inpatient evaluation. And this time it’s involuntary. Meaning she has to go. I broke my heart, but I thought maybe now she’ll finally be able to be stabilized. Meanwhile, she’s declining. Mom only lasted six days. She ended up back at an emergency room in a town an hour away from me. I was so disgusted and sad. My brother also. And my husband. I have been advocating for my mom weeks and this is what’s happening? I met a very nice doctor at this hospital. Finally someone that understood. He mentioned hospice to me and I agreed. Since went through a rehab and a and couldn’t get better either or one of these. At this point, I was told I was caring for my mom at late and doing the job of three nurses. I had no idea. to hospice. I did not want to see her yelling and and her dignity needed to be saved. My mom only lasted four days in hospice. It was her time. I am at peace. I feel with the decision I made, but I’m still hurting and it’s only been a week today. Her services are tomorrow. Why am I still questioning things? I want to be completely at peace with this and I still am questioning things and feel somewhat guilty. I was told that is normal and I have to process that. I have a therapist yes and I have support. Yes but I’m still looking for more. That’s why I am telling my story on this page. I am disgusted with the healthcare system, but I do understand it’s like this everywhere. I was hoping to connect with other people that went through something similar. I look forward to your replies. And please I am very sensitive and emotional right now. I could just use some warm wishes and telling me I did the right thing. God bless.

Quilting brings calm

You did right by her. Sometimes the decline happens quickly. Sometimes it happens with a lot of drama. That doesn’t mean you did anything wrong. It’s just the way it happens for some people. Especially with a UTI in the elderly or those with dementia.

jen ht

Hi Jolove,

You have had so much on your plate. I am sending you love. Doubting how things go with our loved ones is so common.

I just wanted to say that my hand is in yours across the miles.

Take care and know that you are in good company here.

I am wishing you peace and healing.

💜🙏

Jen

Jolove1967

https://alzconnected.org/discussion/comment/265690#Comment_265690

thank you so much

Jolove1967

Thank you Jen

Jolove1967

Thank you so much

SDianeL

so sorry for your loss. You did nothing wrong. Hospice is wonderful. They help so much. It was your Mom’s time to go and for her suffering to end. I wanted my husband to stay but I prayed his suffering would end. I felt guilty at first but as time passed I realized he would not have wanted to live that way. In time you will remember the good times and not the last few years. Praying for your strength and comfort. Hugs. 💜

Jolove1967

Thank you so much for your kind words.

Jolove1967

Thank you so much for your kind words.

ronda b

It's not unusual to question yourself. Try to stop,you did everything that needed to be done. She was so lucky to have you.💗

Jolove1967

https://alzconnected.org/discussion/comment/265815#Comment_265815

thank you so much

Merla

your mom sounds lucky to have had you!

No one'a journey through dementia is perfect and without some drama. Your mom is so fortunate to have had you supporting her, caring for her, protecting her etc. The major drama towards the end is unfortunate but often not avoidable. You made the best decisions you could have at the time so take peace in this.

Jolove1967

thank you so much

Michele P

https://alzconnected.org/discussion/75325/my-story-please-read

I am so sorry for your loss. You did nothing wrong. You loved your mother and did everything you could for her. Don’t blame yourself or have regrets for what you did or didn’t do. You did the best you could do for your mother.

eaglemom

The dementia journey is vast and different for everyone. You did nothing wrong, period. You always had the right intentions for your mom. That's the best anyone can do. Right now your numb. Be kind to yourself and please realize you were there for her. I'm sorry your mom's journey was so difficult for the both of you.

eagle

Jolove1967

https://alzconnected.org/discussion/comment/266146#Comment_266146

thank you so much

Jolove1967

Thank you so much