Both My Parents Have Dementia

BMarshall

I am so heart broken as both my parents are in the last stage of Dementia. I live in North Carolina and they are in Florida. I went to visit them recently in the facility they are in and fortunately with private care. But the suffering, crying, pain, delusion, being uncooperative not to shower or eat is beyond what one can understand. I am trying to be strong but it is too sad and painful to watch. I do not know how long this last stage lasts but the quality of life is completely gone. How does the family get through this and how long does the end stages of pain last? It is so sad with both of them in the same stage. There is no way to even help them.

M1

Welcome to the forum. Have you thought about getting a hospice evaluation for either or both of them? It would offer additional support and might make you feel better that any potential pain is being addressed. You do not need a doctors order to request an evaluation. The facility director will know how to proceed, they probably have one or more hospice groups that they work with.

BMarshall

No I have not thought about that. I thought hospice was when they were dying soon like days? We are getting my dad evaluated next week by his neurologist and psychiatrist. It seems like the facility is trying to just push them to need hospice. They pay huge money for private and memory care beyond incredible and I just don’t understand why this cannot be less painful for them. I think I need a support group too. 😢

2parents/brain change

Hi

I hope you can find a support group. I periodically come to this online community because I have not been able to find one for in person.

Others who have been through it are the most helpful. I do have a close friend I can contact , who volunteers for Alz Association and she is so informed about the disease, having lost her husband to it.

I would have a hard time knowing what to do in your situation. So really look for folks who can help you through it.

I would encourage you to try to connect with your parents caretakers as much as possible through phone calls. I sent my mom's nursing home morning Bagels last week, just so I could help as much as possible. Easy to do through Panera.

Take care of yourself, it is heartbreaking.

Jen

mommyandme (m&m)

https://alzconnected.org/discussion/comment/190868#Comment_190868

Hospice, especially with dementia, is not days or the typical 6 month life expectation. My mom was with hospice for 1.75 years, many on this forum have utilized them for many many months. Please do get an evaluation. If one or both are admitted, they will be a huge help to all of you and …the facility. Hospice is not a death sentence and most likely help with their pain, sadness and agitation. Please have that evaluation and let us know how it goes.

GemsWinner12

https://alzconnected.org/discussion/67278/both-my-parents-have-dementia

Hospice is not only for the last few weeks or months of life, and there are measurable signs of decline which the facility can report in order to get a no cost hospice evaluation. Along with them getting more comfort care, some hospices also provide grief counseling for family member(s) which would be you. My mom was in hospice and in memory care for at least six months before she passed five years ago, and the grief counseling sessions they offered me were helpful. Virtual hugs to you I am so sorry it's a double-whammy for you that they are both experiencing this at the same time/rate. There are medications that can help with the behaviors and you can request to have a talk about that with the facility and their MD's/NP's/PA;s.

I don't recall if you say or not, but I am an "only" / no siblings and now my dad is in decline in memory care in another state and it feels like ptsd for me going through it all over again with the other parent by myself. He still recognizes my voice on the phone, but he's incredibly hard of hearing and never wanted to learn how to text or send/receive pictures with his phone. Even though he qualifies for hearing aides through the VA, he refuses .