Thursday I sent my two sister and a close friend this email:
Late yesterday afternoon, Mom’s doctor called. She said that Mom was about to turn a corner into the last stages of dementia. She said Mom has lost weight, isn’t really interested in eating and she had two spots beginning on her bottom. Not wanting to eat and losing weight means she doesn’t have her systems working very well, so making sure she doesn’t get sores will be a big priority.
She will continue to go to the Center for as long as it benefits her, then they will have to have another doctor see her at the home. Just because of distance. She wanted to ask if I would like to have Comfort Care for Mom from now on. It is their hospice type of care. It means it will be easier for Judy and Didi so that went something happens, they don’t have to call 911. There will be people to come and decide what works best for Mom – it is for the times when the Center isn’t open.
Dr. Myre said she couldn’t predict how long, especially since Mom is still strong. It could be 6 months, it could be more. She said Mom’s brain isn’t connecting to her body very well – she probably won’t be walking any more and at some point she will be bedridden. She has noticed Mom has declined a lot – I’ve noticed it the last 2 or 3 weeks.
I went to see Mom on Monday, but she was very sleepy and a bit cranky, so I didn’t stay. Last Friday she spoke so softly I couldn’t hear her and she was very sleepy. I went in the afternoon because Judy thought she might be more awake in the afternoon. When I come in the morning she has had her meds and right about then, they kick in. She also doesn’t seem to know me, so that may be how it will be from now on.
I am going up to the Center today to take Mom downstairs for a haircut. Dr. Myre said she didn’t like telling me over the phone about it and if I had been there she would have given me a hug. I said I would be there today, I will collect my hug.
I am trying to wrap my head around this and it may take a while. I have wanted her to let go and make the transition; but now that it seems much closer, I’m not sure what I am thinking and feeling.
I received answers from all three. This from my younger sister:
It’s hard. Yet Mom has been ready to go for a long time. A geriatric doctor friend says that when they stop eating, it’s a sign they are ready to let go of life. Palliative care (Comfort Care) is a very wonderful thing. They are focused on making Mom comfortable, and helping the entire family deal with the transition as the patient enters Hospice Care. Hospice (and Medicare coverage) begins (according to Dr. Jeannie) when the patient cannot walk, talk, or feed herself. You will have a dedicated team available there to see Mom through this.
You have already created a stellar safety net to take Mom through the final stages of life. Hospice care opens more resources for Mom, and for you. It is also totally covered by Medicare, freeing you to focus on walking with Mom through this process of releasing. Hospice people are great, so take advantage of the things they offer. They know so much about this part of the process and are deeply tuned into the spiritual aspects of dying, as well as the practical physical aspects.
It is very disorienting to see someone so powerful in our lives become so weak, and to disappear as the dementia progresses. At the same time, there is a strange liberation, because all the old rules don’t seem to apply any more.
This transition time is not only about Mom making her exit from the planet. It is an opportunity for all of her children to be “born again” and reinvent our lives. The life we knew is dying, but new life is continually being born.
And from my older sister:
Thanks for keeping me informed. Candy, your thoughts are so healing and such a help. Yes, reinvent ourselves. Love, E
And from Char, who has been through this with her Mom:
Thanks for the update on your mom. I’m frankly not too surprised (having been down this road before), but I know it’s hard. Do make sure they keep after those sores; no sense making her uncomfortable, if you can help it. My mom had those, too, but of course she was bedridden for quite a long time before she died–as in about 4 years–so it wasn’t to surprising. However, the fact that your mom is losing weight can mean not only disinterest in food but a gradual slowing down of organs, tummy not as able to absorb nutrients, etc. Be prepared–there may come a point when she refuses to eat at all, and that will be her choice, but it’s hard to deal with.
I think Comfort Care is an excellent idea; we had that for my mom, too, and it really does help. They can help you anticipate the changes you will see from now on, and that will help you be somewhat prepared.
I thought your mom had declined quite a bit since the last time I had seen her, but it had been several months, so that wasn’t too surprising, really. When you see someone frequently, the changes seem much more gradual.
I hope you collected that hug! If I were there, I would give you one, too, although today you probably wouldn’t want me to–overnight I have developed a full-blown head cold!! It started with a sore throat yesterday, and BOOM! here it is…..sniffing, dripping, sneezing, etc. I took a Claritin, and that has helped a little, but not enough!
Believe me, I am so glad I have begun to ask for help and let others know what is happening. I have been glad I don’t have to do it by myself. Plus, when I have opened up to other people, I have been amazed to find so many others with the same kind of situation. Even so, it isn’t a cakewalk.
To be continued . . . . . . . . . . .
Gift of RA 