My wife has never really been diagnosed with dementia per se. She suffered a recurrence of her ovarian cancer and end up with ovarian brain metastases in 2016. The only option to give her "more time" was palliative whole brain radiation. It worked, here we are 4 years later.
She is now bedridden, has stopped speaking, basically incontinent because we have to change her as it is too difficult getting to the toilet. Has some delusions but with Ativan as a medication that has become at least tolerable. Has no strength, we have to feed her and she is starting to not swallow her meds so starting to use liquid form going forward. Drooling at times, eating less and less. Sleeps nearly 22 hours or more a day. If she does become awake it unfortunately is around midnight. Not easy to get any rest around her new sleep schedule.
I still have the strength and stamina for the short term but wonder what to expect in the next few weeks. She was still able to get out in a wheelchair on occasion in January 2020 and now by May 2020 we are at home 24 hours a day in a hospital bed in our living room.
There are typical signs that indicate that death is close.
Discoloration to the feet and legs called Mottling.
Sometimes a person will develop a pressure sore called a Kennedy Ulcer, typically near the tailbone area, death is usually within 24 hours but this does not always occur if it does death is rapid.
A change in breathing called Cheynes Stokes breathing. Secretions can build up in the back of the throat tun her on her side to clear do not use a swab as that can cause a gag reflex.
There is a wonderful pamphlet that you can read on line called "Crossing the Creek"
If she is not on Hospice you should call. The Hospice I volunteer with is still sending staff into homes and they will help a lot with information and supplies. The help is not just for her but for you as well.
((hugs))
This suggestion is mentioned in the interest of the wellbeing of you both. And, no, I did not resort to this.
Particularly because hospice now is marginal everywhere, you may not be able get the help you both deserve. My top concern would be to alleviate suffering. All good wishes to you and your LO; this is as tough as it gets.
When my mother was nearing the end, the signs were that she stopped communicating with us, stopped accepting food, and slept far more, with the sleep being deeper than usual. Once this was the consistent pattern she passed away in three weeks.
Do you have help?
We had hospice as well, they were a great help, but weren’t very helpful with timelines, I think it’s just really different for each person. They used scopolamine patches at the end for the secretions, it really helped mom.
You might look into a pure wick system for urinary incontinence. It’s an external device that suctions away urine.
The sleep pattern is challenging, but not surprising. There are clinical studies that suggest that people with dementia take more sleep in order to lessen the effects of the tangles and Tau deposits in the brain. The long sleeps do not stop the tangles and Tau deposits forming, but they seem to minimise their impacts.
My wife of 57 years, now 10 years into Alzheimer's has been in bed now at home for the past 22 months. In September 2018 we all thought she was dieing, but she rallied and and has still retained the ability to communicate to a considerable extent. A local hospice has given very helpful advice. What she eats and drinks is very important. We find that coconut water with Kafir works well, and aim for 1,000 ml per day. Food needs to be mashed up so that it does not require too much chewing. We have considerable help from local Home Instead CAREGivers, which gives me space to do other activities.
It is not easy, but if possible care at home is certainly the safest and best option at this time, when care homes and nursing homes are so threatened by Covid-19. However, you need to set up a life style that is viable for you as well as your wife. Small changes can make a big difference.
Prayers and hope for the future, which remains unknown.
Tare care of yourself so you can continue to be that support for your wife. And recognize and honor the grief you must be feeling as well. I found talking to the hospice social worker was enormously helpful.
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