All my Siblings join the call as the Hospice Care Manager visits with me. She explains the services they offer. I walk her and my siblings through a recap of the past two weeks. All of my Siblings agree we want to start services and ask how soon they can start. The first visit happened that night.
My sister is going to fly in and will be in town when we meet with the Hospice Doctor and Head Nurse who will assess my Dad and make sure the palliative care is serving his needs.
When the visit happens, it’s been one day since I last saw my Dad and he’s weak and his throat looks swollen. We know he’s lost nearly 25 pounds in less than 3 weeks. I’m sure we made the right choice, if the teeth cleaning didn’t wipe him out, the insertion and additional tests needed to put in the feeding tube might have.
We go over the good outcome path and the complication outcome path. We do know my Mom isn’t strong enough to really help my Dad, so we discuss bringing in additional care. From experience, we know my Mom will kick them out.
We ask the Assisted Living facility to up the visits to my parents room to every two hours. We hope this might be enough because the risk of falling for my Dad is a very great possibility and will only add complications to his care. Our only other option is to put him in their in-patient facility, but I wanted to try to keep my parents together which keeps both of them more stable. Tested.
Dear Kay, It’s very hard writing this as I’ve been following your blog for sometime but never commented before. I’m sorry for your recent news. I think you’re on the right path with your dad, though it’s really hard and intensely painful for you. It is many acts of true love in caregiving.
I wanted to thank you for the insight and education you provide by sharing your family’s journey with us. My husband has FTD (diagnosed at 58) and it’s a hard, brutal journey. The isolation alone can be crippling. One of the best and most important things people can do while they are still rational is layout the care that they want if they develop another serious, terminal illness in addition to Alzheimer’s or a related dementia. Not many people take that step. It is a blessing if they do.
Your blog has highlighted the necessity of making those decisions and the need as well for much earlier diagnosis so patients have a much longer period to competently make their wishes known. While not a panacea, written “what if instructions” can make it a little easier for caregivers in a very painful situation. You are following the patient’s own written wishes and can remember your discussions with them as they wrote the instructions. It’s a strange comfort but very real none the less.
Thank you again for sharing your journey and peace, blessings and our prayers for you and your family.
Kathy S.
Our first hospice meeting was the first time I ever saw my Stepdad cry. Which made me weep. Hang in there. Hospice people are special and wonderful people.
They were wonderful to me and helped minimize my Dad’s suffering. It was humbling to see such poise and grace in helping us make this tough journey.