I had not intended to write about Mom's death .. at least not so soon. When I got home late last night and was scanning the headlines, I noticed WYFP! and ended up staying up for another couple hours to write this and post it as a comment. One of the commenters there suggested converting it to a diary, so here I am ..
Mom had Alzheimer's disease. We all noticed as she got older that she was a little "drifty", but by her early 70's it was apparent that she had a real problem. She was diagnosed and put on Aricept, but after about 18 months the drug was no longer effective. Late stage drugs didn't seem to have a useful effect on her.
Throughout this process, Dad took care of Mom.at home. Dad has survived 3 cancers (so far) and shows no sign of slowing down, and as long as Mom stayed mobile and relatively self-sufficient he was able to meet her needs.As the disease has progressed, especially since the medication stopped working, she started sleeping quite a bit of the time. When we last visited in mid-August we got Mom up and had lunch with her and although she didn't really know who we were she knew we were friends.
The family had been supportive of Dad's decision to do the caregiving as long as he was comfortable with it. We offered help, but Dad is the kind of guy who likes to help people but won't ask for or accept help readily. We just let him do his thing and he took very good care of her, keeping her clean and comfortable and in stimulating environments. With Alzheimer's there's no way to tell how fast the patient's dementia will progress, so it's kind of hard to plan around it.
On Sunday the 10th, he finally called. Naturally I was out running around playing one of my hobbies that weekend so he ended up talking to my wife. Mom had declined drastically in the last few days, and was essentially bedridden and incontinent and mostly incoherent or sleeping. She had a living will that excluded all forms of intervention for hydration and nutrition and he was struggling to get her to eat or drink anything by mouth. We knew that Mom was moving into the end phase of her disease and her life, and we contacted Connecticut Hospice to help us to make mom as comfortable as possible.
Hospice, for those that aren't aware, is an organization whose aim is to provide terminally-ill patients a safe, comfortable, and dignified way to die. I won't go into huge detail on the organization, Google will provide plenty of links for you.
The immediately sent over a hospital bed and supplies, assigned a CNA and a nurse to help care for Mom and a social worker to help us and answer questions. My wife and I packed our stuff and headed up there, arriving just in time for the meeting with the social worker. Between the hospice staff, Dad, me, and Mom's three excellent daughers-in-law, we took care of her as best we could .. but by the end of the week we realized that we couldn't provide the level of care she needed at home. We discussed the situation with our social worker and decided to move Mom to the Connecticut Hospice facility in Branford.
The Branford facility has around 50 beds, which look over the Branford harbor and out among all the little islands. Sail and power boats come and go at all hours. The grounds cover a number of acres, and has a patio onto which you can move the patients for fresh air. The building and grounds are open 24 hours a day and 7 days a week, and family and friends are free to come and go as they please. There are rooms set aside for the families, and even a place for family members to sleep when they feel it's necessary.
Unfortunately we only spent about two and a half days at hospice. Mom passed quietly and comfortably on Monday evening with her family all around her, and after grieving with them last week my wife and I drove back here to VA this morning.
I can't say enough about the Hospice folks and the way they supported us and helped Mom. They found and corrected some minor problems that were causing Mom discomfort, and helped us to understand the process of dying. Oddly, they felt that Mom was strong enough to last there for 3 or 4 weeks. My wife and I slept over Sunday night and when we saw her Monday morning we knew she wouldn't last the day .. her breathing was fast and labored, and as the day progressed other signs appeared that indicated she was dying. We all just took turns sitting with her, touching her and talking to her in an attempt to make her new environment as comfortable and familiar as possible.
They provided my little niece (and any others of us who were interested) with art supplies to make decorations for the patient rooms. They hooked me up with an internet connection so I could work and keep an eye on Mom at the same time. They provided social workers, couselers, Reiki therapy! Visiting musicians come almost every day and play for patients and family. It was truly a special place, and enabled us to concentrate on loving and caring for Mom instead of dealing with her physical needs.
I just wanted to put that little (big) plug in for Hospice, they are in all 50 states and there's a national organization too .. please donate or volunteer if you have a mind to.
Thanks for listening
small update
Thank you to all for your thoughts, prayers, hugs .. I'm sort of amazed that a diary of this kind would make recommended, it makes me proud to be a tiny part of this community.