My mom was diagnosed with dementia 2 years ago. Once on meds she has been pretty good. I went away for a week and my siblings each took her for 2 days. She came back a little disoriented and having trouble swallowing. Stopped eating and ended up in hospital. Electrolytes were way off and diagnosed her with congestive heart failure. Then went to rehab. Didn't eat much and needed assistance for everything. Then went to assisted living. She kept saying she wants to die. Refused therapy, hardly ate and sat all day with eyes closed. Now she has declined so much they move her like a rag doll. No strength to even sit on edge of bed. Eats 1 egg for breakfast and only 5% of her lunch and dinner. She seems so spacey now and hardly talks. I can't believe that she could take care of herself 2 months ago and now she is an invalid. Hospice is taking over today. Any ideas how long she has?
There really is no way to know exactly when your mom will pass. As a hospice nurse, I've seen patients last much longer than I thought they would and those who have had a very fast decline and passed way before I thought they would.
I know you're anxious, as anyone would be.
If she's not drinking anything, usually it's a matter of days, and 2-3 weeks without food.
It seems strange that she was fine before you left but had trouble swallowing after 1 week. (The confusion part would be normal due to not being with you and being in different surroundings.)
Usually swallowing problems are in the last stage of dementia (stage 7). During this last stage a person usually can't walk, sit up or talk. Your mom doesn't sound like she's progressed to this point. The only other thing I can think of is that maybe your mom has given up, as in lost the will to live. Whatever the cause, it's a horrible spot to be in-totally helpless to change things.
God bless you both at this tough time.
You mention that your Mom has Dementia, thus there are times when the person forgets how to eat.... or eating has become painful for the stomach to digest.
Her appetite continued to decrease, with no difficulty in swallowing. The last week I was expressing my concern to the nurse about her not eating or drinking. She said that is one of the most difficult areas caregivers struggle with as the end nears. I knew I was bringing her home to die, but the process is difficult to navigate. Momma was taking in so little, I knew it was not enough to sustain her. I asked the nurse if I was dragging the dying process out by encouraging food and drink consumption. She said I was being a loving daughter, but yes. She knew I wanted what was best and easiest for my mother. She said stop offering food and drink, but if she asks for it give it to her. Momma never ate or drank anything again and passed in five days.
Your mother said she wanted to die. And you believe she has given up. Perhaps listening to what she has said and helping her through the process of dying is what you need to do at this time. Between you and your hospice team you need to decide how to proceed. This is not easy, but you will be alright.
As mentioned above, everyone is different and hospice can best advise you. But in case it helps, here is a rough timeline of what I experienced with my Dad :
4-6 weeks prior to passing, Dad started having trouble swallowing. Eating, but was changed to a mostly soft/liquid diet and intake slowly lessened.
2 weeks prior, he was consuming about the equivalent of 1-2 Ensure, and sometimes not every day. At this point he became extremely weak and very hard for me to maneuver alone, and then became bed-bound.
2 days before he passed, Dad suddenly had a good day. I was hopeful. Apparently a last good day close to the end is common, and should be treasured if it occurs.
The next day, he became non-responsive. There was no food or water intake, and the next afternoon he passed.
Like you, I during this time I worried about his intake and didn't want him to suffer. Hospice mentioned people who aren't moving around a lot also don't burn a lot of calories. It can also be more harmful than helpful to eat at this time, so don't force it.
I'll pass along a suggestion from my Dad's oldest friend: Offer your Mom something she really, really loves. Don't force it, but it might give her a bit of pleasure.
It does seem though that our loved ones don't fare well with change; consistency, routine & structure works. They do so much better with the same old/same old of everything.
I am sorry about your mom and what you are both going thru. Illness & disease affects everyone, mentally & physically at times. Please do not put blame on yourself.
It sounds like you are providing the best medical care, yet, I would question any medication changes also, they can create havoc, so many side effects. You may want to consider withdrawing meds, especially ones not really needed. Some memory care facilities strive to lessen or eliminate meds all together. It's all about their comfort, the new normal.
Stay strong & focused. Be in your mom's corner, caring & loving. Blessings 🌸
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