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.
My LO is still alive, though, sleeping more and more. Now, almost completely bed bound, no speech and in semi conscious state, but, still eating some. She has lost one-half her body weight from when she went on hospice 18 months ago. and is around 75 pounds. (Height 5"5). Every day, I wonder how much more she can take.
Please stay strong and do whatever your heart tells you to do. I got lectured from an Aunt and her two daughters for "not letting my mom go" by staying with her. I wouldn't change anything as I was by my mom's side the entire time. Where else would I be? She was not alone and I don't regret that decision for a minute. I know you will do whatever you feel is right. I'm saying prayers for you.
You can download the pamphlet or ask a hospice provider for a pamphlet. It sounds like a hospice evaluation is in order. My Mom has been on home hospice care since before COVID began, and although she has dementia, there are days when she will wake up, wash and dress herself, and say she's ready for her breakfast! Most other days, she has no idea what day it is or as she always asks, 'what am I supposed to be doing?' We take it one day at a time and try to interact with her and make her life as comfortable as we can. We have five dogs who she adores and they bring a smile to her every day, they are great therapy. This isn't an easy process for anyone going through it.
hospice should be telling you what to expect! Are your moms extremities ever so faintly starting to ‘mottle’? That’s a two weeks maybe less sign. But I am not professional-again I say ask hospice how you can prepare for what’s coming. Will the body be picked up at home? Is it ok to just sponge her mouth? I can say so much more but please you NEED some answers from those who deal with this often.
Please check Yelp in your area for reviews on hospice providers and call today. Doctor needs to prescribe it.
The next day I was how I usually was in taking care of her. Then at 11:00 am after taking her meds and speaking with me, she passed.
I know hindsight is 20 20 but I wish I had believed her. I would have had this time to be saying goodbye, instead I was so shocked, it was like I was in a trance. My point is sometimes no one knows.
I can tell you that her doctors have not been able to give me a time frame. It could be weeks or months, they say, which is not helpful. When she was first diagnosed, they told us 3 months. A year and a half later, here we are. A couple of months ago they told us weeks. And here we are. They really have no idea. They just keep telling me to take it one day at a time. So I don't think that even speaking with a doctor will give you a clear time frame.
My advice? Look into Hospice as they have a very good hold on what exactly is happening with your wife and how long she still has to life. You probably can talk with her doctor for a name or number. My understanding is, if they accept her into Hospice, they tend to her and some of her needs which will give you some relief.
Hope you look into it.
Secretions are what I use to describe saliva.
Much of the swallowing reflex is absent and the body does not usually recognize thin fluids as something to swallow so often they are inhaled and go to the lungs (aspiration pneumonia is a potential problem)
And much of the secretions gather in the back of the throat and cause a gurgling sound. Often the first thing one tries to do is remove the secretions with a swab and that can cause gagging or worse vomiting.
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.
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.
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.
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.
It discusses eating, sleeping/waking, responsiveness, color of skin etc. Very helpful in dealing with each day.
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.