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Buggsroo

My husband’s sojourn in the hospital is about to end and he will be going I to a long term care home. The hospital has really done an amazing job with my husband. He is clean, well cared for and he smiles, opens his eyes really wide to take in the activity around him.

His doctor called me today to suggest palliative care and I said no, I realize in many ways his days are numbered but he was happy and content. I told the doctor when it gets to a point where he is not happy, then ok.

I think he will do well in this small care home he will be going into. Thing is that sometimes doctors want to jettison patients that are difficult to treat. I don’t disagree, however when someone is happy and smiling, I am not ready to call it quits.

my husband’s daughter went to see him this morning and he was very sleepy. She phoned me and said she cried when she saw him. I told her I cry when I see him too. Last time I visited, he held my hand and smiled at me. It was nice.

I search my conscience because when he passes, his pension goes away. It will be hard to manage. I don’t want to think I am hanging on for that, I owe him the best outcome.

Thank you all for being here.

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Joydean

Buggsroo it’s so good to hear from you! I’m glad your husband is doing so well, smiling and happy! None of us could ask for more. There are days when I think my husband would do better where there are others around him. He does like it when our kids come and visit but he honestly can only take a little bit of time before he wants them to go away and yet he cries when they do.

I hope you are taking care of yourself! Best wishes to you and hope your husband smiles for a long time!

Buggsroo

Hi Victoria

we did have a spousal option but he decided he wanted to receive the whole pension so opted for that instead. He has RRSPs which I will get so will have to juggle things. My brother is a financial planner and he will help me with finance part. Thanks though.

In Canada, you get a spousal survivor’s benefit so will apply for that.

M1

This all sounds like great news. That said, im going to play devil's advocate and tell you that i suspect the doctor is right, palliative care is probably what is appropriate. No one can make that decision for you, and recognize that it doesn't mean no treatment. My partner is not as far along as your DH, and having just been through a gruelling week-long hospitalization with her for what should have been a pretty straightforward illness, i will tell you that it was hell on wheels from start to finish, she had no clue what we were doing to her (only iv fluids and iv medications), and I'd be hard pressed to do it again.

Joe C.

Buggsroo, It is good to hear your husband doing well and that you have a care plan going forward. I do not know what palliative care implies in Canada but I suggest you discuss what treatment would look like going forward. I placed DW on hospice about 6 months ago and the only change in her care is an increase in personal one on one care by aides, a social worker, chaplain and a nurse. Nothing else has changed and I still have final say if care changes were recommended. I do not look at hospice as giving up in any way, rather I see it as a means of getting additional care for DW improving her quality of life. If your husband is moved to the small care home the additional care form the palliative care team may be what keeps him healthy and happy.

midge333

My only thought is that most people wait too long before consulting palliative care or hospice. This is especially true in cancer because people feel they are "giving up". Palliative care is there to help you live the best possible life with the time you have left.

Buggsroo

Thank you, I appreciate what you are saying. I imagine that is what my husband will be receiving sooner than later. I will be visiting tomorrow to see what is going on and to get a better idea on how to go forward.

JDancer

Please consider speaking with palliative care. It's about keeping the patient comfortable. They focus on symptom relief. It's not the same as hospice and doesn't mean you're giving up.

Awto123

https://alzconnected.org/discussion/67067/more-news

I am sorry you have been through so much and at the same time happy your man is smiling !

I am newly diagnosed and in a trial .

May I ask the age of your husband and how long ago he was first diagnosed

Thank you

and be at peace

Elshack

Buggsroo,

Palliative care is really helpful. They can access your DH's situation and when it is necessary to go into Hospice care. Extra set of eyes on the patient and they are very kind and understanding. I consider it an adjunct to the care my DH is getting in memory care. He is now on Hospice but they access him every 6 mo or so.

Kibbee

Frankly, in a world where there is so little help available to support caregivers, when / if palliative care is ever offered to my DH I will grab on with both hands. The medical folks who are advocating for palliative care for your DH are doing it based on their years of experience in helping patients with dementia, and supporting caregivers. Hopefully you will have faith in their recommendation, at least enough to give it a try. If it doesn’t work out it can be discontinued.