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.
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?
Praying for the strength you need.
Mother, who had vascular dementia, ate less and less and slept more and more over a period of about 6 months. The last month it was very noticeable, Though your wife is not a typical dementia case the slow down" seems similar. Sounds like you need some support. Hospice could provide that.
Assuming she is on Medicare, ask her primary care MD to certify her for Medicare hospice services. These services are delivered in home unless the patient cannot be managed at home. If not, inpatient hospice care is available. There is also the opportunity for limited duration inpatient hospice respite care, to allow caregiver some relief. You should ask for the respite care right away so you can recharge and get some rest.
Hospice care will provide nurse visits, comfort care and you may get more relief. Medicare hospice also pays for durable medical equipment, including hospital beds.
Once at hospice, she refused water and did not even want anyone to wet her lips. She lingered 14 days. We thought she was holding on til my brother came, but even after that, she kept on for a week. The hospice doctor said three weeks was the longest he had seen.
In hospice, they will use a catheter, so they can monitor kidney output.
Mom passed the day dad told her he had no more songs to sing for her unless she could tell him her favorite, we also told her no one was mad at her, her brothers and sister were waiting to see her, and we would see her again some day.
Bless you, call hospice.
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.
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))
Depending on where you live, there may be services available from a reputable Hospice. Services I am familiar with in my area include medical and therapeutic (i.e. music) service for patient's care, providing support for caregivers' (you) overall wellbeing.
Supportive services include providing resources [volunteers and activities] so caregivers (you) can leave the house and do something relaxing and enjoyable for 1+ hours each week, and provide end of life guidance. If a reputable Hospice is not in your area, please talk to your wife's doctor about your concerns for her. Plus talk to your doctor about your well-being.
Remember, in order to help others you must use your air-mask first. You are doing the best you can and that's enough.
She needs to be under the care of hospice AND you need respite! Even a day away will help! Once you have care for her, hospice or whomever, get away and spend time doing something you enjoy. It could be sitting on a bench at a park listening to the birds or it could be skydiving. Whatever it is spend some time doing that. Then you can come back, adjust the schedule so that you are NOT her 24/7 caregiver, and look forward to spending her last moments with her not just waiting for all this to end.
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.
It discusses eating, sleeping/waking, responsiveness, color of skin etc. Very helpful in dealing with each day.
Her food intake is reasonable considering she is bedridden all day. Yesterday, for example, two scrambled eggs, a protein chocolate malt, and 4-5 bites of a chicken pot pie. Probably 1,000 calories. We are using Thick it for water now to make it easier to swallow.
Okay, now that I read your response to someone it looks like she ate well last night, but that was my experience in the beginning of the decline, though my person did not eat as much as yours did. If hospice is saying <6 months I can go with that. The key is when they don’t eat anymore...more delusions/illusions, can’t swallow, maybe sores forming. I can’t say imperative enough, make sure hospice is involved so they make the transition for her as comfortable as possible. I didn’t know the signs of death either and she only received 2 days of comfort in her passing. I regret this now.
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.
Nobody knows exactly when a person will pass. If your wife if not eating or drinking enough and losing weight, those habits are not compatible with maintaining life. In my father-in-law's case it was about 2 months. He did not eat or drink enough to maintain life. His organs slowly failed and he died peacefully in his sleep.