Hi - I am 32 and my sister is 36 and together we are taking care of our mother (69) with Vascular Dementia. My sister lives with and is the primary caregiver for our mother and we have hired 2-3 people each day to come in and help with my mom (more affordable than a care home, and its what she wanted). In September we called in Hospice care after mom suffered a stroke.
Fast forward to today -- mid-April 2024 -- and things have declined quickly. She has been incontinent for a couple years but we try to get her to the toilet as much as possible. She doesn't eat much and has been losing weight for the last 7 months. But in January, things took a hard turn. We kept witnessing what we thought were "mini-strokes" every 1-3 weeks. Her most recent mini-stroke has left her wheelchair-bound, only standing to walk when she has help, to get in and out of the wheelchair to get to the toilet, bed, couch, etc. This last mini-stroke has also made it more difficult for her to seemingly follow directions and weaker. She eats pretty well, although we are getting to the point where we have to put the food or drink to her mouth because she can't use her hands well. We also have very strong mood swings, some anger but mostly big crying fits.
All this is to say, my sister and I feel at a loss for how long this will last for. Getting dementia was my mother's worst nightmare (she watched her mother die of it, and was very scarred by that experience). Every skill and ability lost breaks my heart, and I hate knowing she would be so upset by this. In fact, sometimes she will acknowledge that she doesn't understand why she can't control her legs (not in so many words).
I am hoping someone who has been in this stage can help me better understand:
What comes next?
What new symptoms should my sister and I be on the outlook for?
And God forbid, how far are we from the end of her life? I hate watching her suffer, knowing she didn't want this for herself. Unfortunately, my family hasn't found much help in hospice care.
Fast forward to today -- mid-April 2024 -- and things have declined quickly. She has been incontinent for a couple years but we try to get her to the toilet as much as possible. She doesn't eat much and has been losing weight for the last 7 months. But in January, things took a hard turn. We kept witnessing what we thought were "mini-strokes" every 1-3 weeks. Her most recent mini-stroke has left her wheelchair-bound, only standing to walk when she has help, to get in and out of the wheelchair to get to the toilet, bed, couch, etc. This last mini-stroke has also made it more difficult for her to seemingly follow directions and weaker. She eats pretty well, although we are getting to the point where we have to put the food or drink to her mouth because she can't use her hands well. We also have very strong mood swings, some anger but mostly big crying fits.
All this is to say, my sister and I feel at a loss for how long this will last for. Getting dementia was my mother's worst nightmare (she watched her mother die of it, and was very scarred by that experience). Every skill and ability lost breaks my heart, and I hate knowing she would be so upset by this. In fact, sometimes she will acknowledge that she doesn't understand why she can't control her legs (not in so many words).
I am hoping someone who has been in this stage can help me better understand:
What comes next?
What new symptoms should my sister and I be on the outlook for?
And God forbid, how far are we from the end of her life? I hate watching her suffer, knowing she didn't want this for herself. Unfortunately, my family hasn't found much help in hospice care.