My 73 year old sister came to live with us about 18 months ago. It was the week after her 81 year old husband’s sudden death occurred, just one day before her release date from rehab, due to a string of seizures. She had been diagnosed with Vascular Dementia and Altzheimer's about 7 years before, and has history of 2 aneurisms, 2 strokes, multiple seizures, coronary artery disease, alcoholism, and bipolar disorder, She has been unable to walk since strokes in 2015, and has had 4 years of incontinence.
In the past 18 months living with us, she has had about 7 short hospital stays due to seizures and UTIs.
Because my husband and I are 68 and 73, we hired 2 CNAs, one for weekdays, and one for weekends, their shifts are from 9-5.
As her medical POA, I went ahead and retired to be here with her due to a pattern of frequent mini-seizures that unpredictably pop up with just a moment’s warning.
For the past 6 months she has only wanted to sleep most of the day, and eats next to nothing. I have had to bribe, beg, and cajole her to eat small amounts and to spend just a few hours a day with us in family room.
Two weeks ago she was hospitalized several days due to experiencing a week of sudden dizziness, noticeable pallor, and a vacant look. She was given a diagnosis of severe malnutrition/protein loss, with a BMI of 16. The attending physician strongly recommended hospice due to the set backs each hospital stay presented with her dementia becoming more pronounced, until she settled in back home for a week or so. We asked her what she thought about the doctor’s recommendation, explained comfort care, and all her medical needs being met by our CNAs and a visiting nurse that came to our home. The main appeal was her desire to be with her husband in heaven and to be at full health.
After just 5 days of the hospice team coming one at a time to visit, to explain to her what they could offer, and her joy at no more ambulance trips, my sister becomes the energizer bunny. This past week she has taken no naps. We take her to her room to rest and we watch her look around the room a few times, see her stare up at the monitor for 30 minutes, and then she asks to join us. She talks non-stop if she is up, tells us things that God has told her, and believes it is her mission to help us and encourage us.
And she truly is the sweetest!
She has begun eating like there is no tomorrow, which is the only time she isn’t thanking us for being rescuing angels, and thanking the nurses for trying to bring her back to full health.
She has recklessly maneuvered her walker around me a time or two, and once we both fell en route to the rest room, because she tried to walk out of her walker to get their before I did. She can’t wait to show us how she can ready herself to sit on toilet and wants to pull up her pants before she even finishes peeing, to be sure she beats us to it. She is unable to do it on her own, but believes that if we weren’t in her way she could do it. She attempts to dangerously get into her bed and truly thinks she can.
She will not volunteer to go to bed now at night and exhausts herself talking, while trying to wait us out. I tell her that we are completely exhausted and to let us tuck her in.
We are all completely exhausted and have responded over and over again to encourage her.
For a few days she has expressed her belief that she no longer needs Hospice.
The hospice nurse came today and took her vitals which were fine, but the blood pressure was high for her, as hers is often low.
He just sat with my husband, my sis, our family CNA, and me to visit. He stayed about 2 hours as we interacted as a family.
I walked the Hospice nurse out and he believes that she is in a manic phase and may be transitioning. He reminded us that we could give her anxiety meds 3 times a day to help her. We knew that, but she slept so much, it never crossed our minds.
Has anyone had a loved one with dementia/Alzheimer’s transitioning after a manic episode?
First I am surprised you are able to explain things to your sister and her understanding being diagnoised 7 years ago with ALZ.
Maybe because she is bi-polar she is having a manic episode. My cousin gets this way and that is when he calls me just chatting away.
I also see here an anxiety and I would have her medicated for that. Its not good for her. Its like being the Energizer bunny all the time. My Mom started humming and she progressively got louder. She would not stay still and was scooting all over in her wheelchair. She was given something to calm her down. She was gone 2 weeks later. They do get a burst of energy.
My husband was under hospice care in our home, for the last 22 months of his life, and I was told by them at least 3 different times,(prior to his actual dying process) that they felt he was "transitioning," and each time he just kept on keeping on. Hospice is not God, and only He knows that day and time that He will call your sister home, so just enjoy whatever time you have left with her. And I would also only use medication if absolutely necessary. Let her enjoy whatever time she has left.
One time he even walked out of hospice.
He was on his own for months.
When he returned to hospice he was near the end.
He seemed to be at death’s door. His son, daughter and grandchildren arrived and he perked up! He was eating, drinking, laughing, telling stories and jokes.
Nurses referred to it as rallying. It can happen shortly before death.
Shortly afterwards, he went downhill again. He hung on unconscious for a few days, then died.
When nurses refer to ‘transitioning,’ they are referring to dying.
You mentioned your sister being manic. Does she have bipolar disorder? Or could she be rallying?
No doubt that this is a difficult time in life. I wish you peace as you walk through this journey with your sister.