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[rooskieroo10]

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.

 

[LewyDementiaCarer]

Hi, it's important to note that this journey is different for different people, there is no schedule or even decline stages that applies to everyone. I can give you some insight as we care for someone in late-end stage Lewy dementia. And from the point you are talking about we saw a gradual continuation of rapid declines & plateaus wherein her ability to walk (co-ordination & balance) faded until she could no longer walk at all or even bear her own weight to stand, eventually even when supported by 2 other people and was unable to use the toilet correctly, so became basically bedridden, and has to be changed & washed in bed, and very quickly she lost the ability to follow instructions, so it now takes 2 people to manually turn her for cleaning etc, and we have an electric hospital bed & slide sheet at home for this.

We had difficulties with restless nights, hallucinations and anxiety attacks, but we managed to get this all under control through anti-anxiety medications prescribed by the Dr which have really helped her sleep at night.

Eating slowed down and she started coughing as she was losing ability to chew & swallow food properly. This meant we moved from soft foods to almost all purees now, and she also requires to be sat very upright and drink only thickened liquids to drink as she chokes (aspirates) thin liquids by mistake. She needs assistance with almost everything including spoon feeding/weaning tiny amounts when she wants to eat. (More often she will just want to play with the food/drink like a baby would).

Verbal communication is now very difficult for her, somedays she can barely speak a word, but we are still able to communicate with her through basic signaling (thumbs up/down, miming out drinking or eating etc this kind of thing) and occasionally she is able to say a few words that we can string together to make sense of, but it is becoming less and less easy for her to say anything that resembles words.

More lately she has lost the ability to sit up straight in bed and falls off to one side if not supported by cushions and sometimes she struggles to keep her head up too. At times she seemingly will freeze/fall asleep/stare into space and become almost non-responsive for a few minutes and then just as quickly snap out of it again and continue as if nothing happened.

In general now, she sleeps more and more (approx. 15 hours a day), and eats less and less (approx. a few tbsp-1.5 cups per day which fluctuates a lot, some days it's barely anything). Her hands and feet are always cold now and she struggles to understand anything. Occasionally now we've noticed very brief moments of irregular breathing/gasping in the night... I expect this to increase as her brain struggles to regulate her systems more and more and we have discussed medical support at home as she passes.

 

[rooskieroo10]

Hi, it's important to note that this journey is different for different people, there is no schedule or even decline stages that applies to everyone. I can give you some insight as we care for someone in late-end stage Lewy dementia. And from the point you are talking about we saw a gradual continuation of rapid declines & plateaus wherein her ability to walk (co-ordination & balance) faded until she could no longer walk at all or even bear her own weight to stand, eventually even when supported by 2 other people and was unable to use the toilet correctly, so became basically bedridden, and has to be changed & washed in bed, and very quickly she lost the ability to follow instructions, so it now takes 2 people to manually turn her for cleaning etc, and we have an electric hospital bed & slide sheet at home for this.

We had difficulties with restless nights, hallucinations and anxiety attacks, but we managed to get this all under control through anti-anxiety medications prescribed by the Dr which have really helped her sleep at night.

Eating slowed down and she started coughing as she was losing ability to chew & swallow food properly. This meant we moved from soft foods to almost all purees now, and she also requires to be sat very upright and drink only thickened liquids to drink as she chokes (aspirates) thin liquids by mistake. She needs assistance with almost everything including spoon feeding/weaning tiny amounts when she wants to eat. (More often she will just want to play with the food/drink like a baby would).

Verbal communication is now very difficult for her, somedays she can barely speak a word, but we are still able to communicate with her through basic signaling (thumbs up/down, miming out drinking or eating etc this kind of thing) and occasionally she is able to say a few words that we can string together to make sense of, but it is becoming less and less easy for her to say anything that resembles words.

More lately she has lost the ability to sit up straight in bed and falls off to one side if not supported by cushions and sometimes she struggles to keep her head up too. At times she seemingly will freeze/fall asleep/stare into space and become almost non-responsive for a few minutes and then just as quickly snap out of it again and continue as if nothing happened.

In general now, she sleeps more and more (approx. 15 hours a day), and eats less and less (approx. a few tbsp-1.5 cups per day which fluctuates a lot, some days it's barely anything). Her hands and feet are always cold now and she struggles to understand anything. Occasionally now we've noticed very brief moments of irregular breathing/gasping in the night... I expect this to increase as her brain struggles to regulate her systems more and more and we have discussed medical support at home as she passes.

Thank you - this is really helpful. We are getting to the point where mom really needs more than one caregiver to move around, given her weakness so its interesting to see you mention the concept of needing more than 1 person, because it feels like we are working towards that. I know no one can give us a timeline, but can you share how long it was from needing 2 people to walk to being bedridden and in the position they are today?

I only ask because my sister and I have limited funding available to care for my mom, and we are trying really hard to be smart about it and don't want to overspend too quickly and have a bigger problem down the road. If you don't feel comfortable answering, I understand.

 

[LewyDementiaCarer]

Thank you - this is really helpful. We are getting to the point where mom really needs more than one caregiver to move around, given her weakness so its interesting to see you mention the concept of needing more than 1 person, because it feels like we are working towards that. I know no one can give us a timeline, but can you share how long it was from needing 2 people to walk to being bedridden and in the position they are today?

I only ask because my sister and I have limited funding available to care for my mom, and we are trying really hard to be smart about it and don't want to overspend too quickly and have a bigger problem down the road. If you don't feel comfortable answering, I understand.

Most welcome. I can only give you our experience, and I'm purposefully logging the decline for you, so please know we still have lovely moments with her where she knows who we are and loves holding our hand or having her hair washed/brushed etc.

But as far as timescale: For us it went quite quickly, it was around November-December time she started needing 2 people to help her stand/walk a few steps, as one person wasn't enough to prevent her falling, still we tried lifting her on and off the loo etc. but by late January-February she became unable to keep herself hygienically clean even with assistance on the toilet, so we had no choice but to switch to bed care, and by late March it was really needing 2 people to change her/clean her in bed, as she then became unable to follow instructions or roll over even with 1 person helping. (But please note this can vary wildly depending on the person)... for us we had what feels like an onslaught of rapid declines spanning about the last 4-5 months.

 

[rooskieroo10]

We still have great moments with my mom. In fact, sometimes she plateaus and it almost feels like we get worried for nothing. But lately, these last few months, the rapid decline has felt like its moving at a breakneck pace.

That timeline is helpful, but truly the symptoms and disease progression you shared is likely most beneficial. It gives us an idea of what we can look at for and if we see something we can have a better idea of what's most likely disease progression. I feel like we are talking to a wall when we ask our hospice group which symptoms we should be keeping an eye out for next. It can be frustrating. I've definitely gotten better info from other caregivers.

 

[SherwoodSue]

Where is your GP with this.? Does your GP have palliative care list. ? Is your mum on the list ? Has anyone prescribed anticipatory medicines ?

I think I would request an appointment

 

[rooskieroo10]

Where is your GP with this.? Does your GP have palliative care list. ? Is your mum on the list ? Has anyone prescribed anticipatory medicines ?

I think I would request an appointment

My mom is on palliative care and we have some anticipatory medicine for pain.

 

[LewyDementiaCarer]

We still have great moments with my mom. In fact, sometimes she plateaus and it almost feels like we get worried for nothing. But lately, these last few months, the rapid decline has felt like its moving at a breakneck pace.

That timeline is helpful, but truly the symptoms and disease progression you shared is likely most beneficial. It gives us an idea of what we can look at for and if we see something we can have a better idea of what's most likely disease progression. I feel like we are talking to a wall when we ask our hospice group which symptoms we should be keeping an eye out for next. It can be frustrating. I've definitely gotten better info from other caregivers.

I'm glad you find it of some use, honestly we had the same issues and had to do endless research ourselves and as we are caring for her at home we continuously have to keep reaching out to the Dr to provide updated support as needed (like when we noticed she was starting to cough when drinking thin liquids and was chewing on her food for hours, we realized she needed thickeners from the pharmacy and started to make softer food for her etc), as no medical staff would shine a light on what to expect.

There seems to be a fairly typical decline in late-end stages that goes from loss of balance & coordination, ability/strength to support body weight even in sitting position, ability to follow instructions, verbal communication, ability to chew & swallow correctly and eventually in the end stages, the breathing becomes irregular and shallow... but of course the timeline & order varies massively from person to person, and can be fast or slow, or even sped up by other complications that may arise, as they become ever more susceptible to pneumonia & sores/infection etc. So it can become impossible to predict, other than instinct and knowing the person and how quickly things are developing. So I understand how difficult it must be for you.

Again I can only offer our personal experience, but feel free to reach out anytime and keep posting - I know how frustrating it can be with all the unknowns.

 

[silkiest]

Hi @rooskieroo10 , its really difficult with vascular dementia to make any predictions at all as how and when your loved one will deteriorate because it depends on the frequency, position and severity of strokes and mini strokes. The position in the brain has a big effect as different parts of the brain control different things e.g two people could have the same size bleeds in different parts of the brain but one could loose the ability to speak and the other could loose the ability to understand speech.