Coping with hospice

Jamie Fren

Hello everyone, I’m new to this community. I (26 years old) have been a caretaker for my 86 year old grandmother for 6 years since her diagnosis was made (aphasia dementia). She has recently been declining, and just this evening my family had made the decision to begin hospice care for her. It was an emotional decision, but I was away and was informed a couple hours ago. I’m genuinely going through a rollercoaster of emotions tonight and have had trouble sleeping. There’s some concern she may not be around to see the fall and I’m grieving extra. Any advice, kind words, or ways to cope would be greatly appreciated. She was my maternal figure growing up, and it feels like I’m losing a major person in my life.

M1

Hi Jamie and welcome to the forum. It's hard when the realities of this disease hit you head on, and this is clearly one of them. Death is never easy, and especially when you're young. But Hospice can be a lot of help, and I hope that will become clear when they come to evaluate her.

I'm sure if your grandmother were her old self, she would be telling you to live your own life, which at 26 you have every right to be doing. You can honor her by making your plans, as she leaves you, for how you will carry on and pursue your own dreams when your caregiving duties are behind you.

mommyandme (m&m)

Hospice will be a huge support and not necessarily indicative that death is near. They will be there to help you too, now and after your dear grandma moves on. This is your new reality, try to adjust to it. Its all so very hard, I’m truly sorry for your heartache.

welcome to this forum but sorry you need it. Keep coming back, lots of wise and supportive folks here.

ButterflyWings

What a blessing you have been to her. I agree with the feedback above.

Hospice has made my beloved DH's life easier, more comfortable, and mine so much better as I help him weather this AD journey with all the dignity and caring as he deserves. I know it feels like a scary phase signaling something that happens to all of us (end of life at some point), and if you did not get to participate in the decision that may hurt, but I believe it is the compassionate and caring way to support people in the later stages of a disease.

If she provided advance directives, or discussed with others even before you were born possibly, this may actually be your dear Gmom's decision from long ago. I know that 2 of my aunts were very clear that they did not ever want extreme measures to try to prolong the inevitable, since they lived full long lives and wanted us to live ours as well. Hugs to you, as I do understand how you feel, regardless. Been there. Headed there again.

Here is a link from the Alz Assoc. Solutions page of this site: Hospice Care| Alzheimer's Association

Jamie Fren

https://alzconnected.org/discussion/comment/177361#Comment_177361

Thank you for your kind words. It really means a lot. I’ve been intertwined with caring for her through different phases of her diagnosis. It may sound silly, but I have been having a hard time accepting life after caregiving for her. Letting go of control and finding acceptance has been extremely difficult. I hope I can reach a point where I can make plans and celebrate her instead of feeling guilt, and like I could have done more or been more to her.

Jamie Fren

https://alzconnected.org/discussion/comment/177373#Comment_177373

Thank you for your well wishes and kind words. I truly hope for the best as I’m learning to process it all.

Jamie Fren

https://alzconnected.org/discussion/comment/177402#Comment_177402

Thank you for your experience and well wishes. I wish you and your DH a comforting and safe journey, and I’m glad to hear that things have been easier and improved upon.

The decision was made without consulting me, but it also feels like one of the only options at this point given the circumstances. I’ve been holding it together around her, talking to her, and explaining what I’m doing (Ex. Repositioning her for comfort).

Thank you for the resources and kindness. Wishing you strength and healing, and will keep you both in my thoughts and prayers. Hugs your way.

loveskitties

Hospice does not come in and take over patient care. They provide assistance, equipment and supplies. They are not there 24/7, but are available by phone.

You will most certainly still be needed.