Caring for a relative with vascular dementia

[Kinnock]

Anyone had experience of this, as it's well beyond my own knowledge and I'm unsure about what's practical?

 

The Mother-in-law (73) had a stroke, and while she's gradually recovering use of arms and legs, she's still on a ventilator and cannot swallow, so feeding is via a tube.

 

The hospital Doctor says she will recover slowly, and they will try to remove the ventilator when they think she's strong enough to breathe unassisted.

 

But of even greater concern to me is that she looks (in my amateur view anyway) to have serious dementia.  She does not recognise her relatives and is not communicating proactively 2 weeks after the stroke.

 

The Doctor and nurses dismiss my concerns about dementia, but even though she can sit up and look at people, there looks (to me) to be no higher level understanding about what's going on around her, and no attempts at communication.

 

After consulting Dr Google it sounds like vascular dementia to me.

 

My wife has plans for moving her back to her Mother's house and caring for her there .... but is this practical?

 

She's on a ventilator, fed through a tube, suffering from probable dementia and incontinent.  Back in my home country that would mean professional care in a nursing home ..... my the Missus thinks she can care for her.

 

Surely this will be a huge strain?

[Sheryl]

There is no reason at all to think she has dementia. Vascular dementia occurs very slowly not suddenly.

 

It is quite common after a stroke to have trouble (or inability) speaking and you may be mistaking this for dementia.

 

The aphasia (inability to speak) may or may not improve with time. Improvement after a stroke can continue for up to 6 months and is gradual. Not speaking after a stroke  does not mean the person does not understand or recognize people or that they are demented.

 

Keep in mind too that being on a  ventilator itself interferes with speech. 

 

It is significant that the medical personnel caring for her -- who will have seen hundreds or more of such cases -- do not  suspect dementia. 

 

She is more likely to improve in familiar surroundings  than in an institution, and it is not customary in Thailand to put parents in a nursing home.  Millions of  Thai homes have elderly people with incontinence and other issues in them, cared for by family. (And with hired helpers  if the family can afford). Yes it is a strain but so is caring for an infant. And feeling that one failed in one's duty to a loved one is an even greater burden. So let your wife do what she feels she must and try to be supp8rtive. Maybe offer to pay for some in-home help (but let your wife decide how best to utilize that person). 

 

Ventilator care is of course more difficult in the home  but they will probably not discharge her unless/ until she is able to breathe on her own.

 

It is not possible to make a diagnosis via Google, even for a trained health professional.  The search engine is not designed or  constructed for it.  

 

 

[Kinnock]

58 minutes ago, Sheryl said:

There is no reason at all to think she has dementia. Vascular dementia occurs very slowly not suddenly.

 

It is quite common after a stroke to have trouble (or inability) speaking and you may be mistaking this for dementia.

 

The aphasia (inability to speak) may or may not improve with time. Improvement after a stroke can continue for up to 6 months and is gradual. Not speaking after a stroke  does not mean the person does not understand or recognize people or that they are demented.

 

Keep in mind too that being on a  ventilator itself interferes with speech. 

 

It is significant that the medical personnel caring for her -- who will have seen hundreds or more of such cases -- do not  suspect dementia. 

 

She is more likely to improve in familiar surroundings  than in an institution, and it is not customary in Thailand to put parents in a nursing home.  Millions of  Thai homes have elderly people with incontinence and other issues in them, cared for by family. (And with hired helpers  if the family can afford). Yes it is a strain but so is caring for an infant. And feeling that one failed in one's duty to a loved one is an even greater burden. So let your wife do what she feels she must and try to be supp8rtive. Maybe offer to pay for some in-home help (but let your wife decide how best to utilize that person). 

 

Ventilator care is of course more difficult in the home  but they will probably not discharge her unless/ until she is able to breathe on her own.

 

It is not possible to make a diagnosis via Google, even for a trained health professional.  The search engine is not designed or  constructed for it.  

 

 

Thank you for the very helpful and wise advice. 

 

We've already arranged for the Mother's house to be improved (basically rebuilt) to make living on the ground floor possible, and if she's coming home we'll order a proper hospital bed etc .... but I think I"m just disappointed that my wife seems to have taken on the total responsibility when there's three older siblings doing nothing to help. 

 

I guess I was looking for a valid reason to not let my wife take on the tough challenge of being a carer.  

 

I think it may be Thai culture that the youngest daughter does all the work .... or maybe just the daughter with a foreign husband.

 

[Polar Bear]

Are you sure she's not just doped up on painkillers and/or sedatives? It's possible to have ventilation without sedation, but it's unusual because it's a pretty unpleasant procedure. 

Also, when she's out of hospital (or while she's there if you aren't confident about the care she is getting), watch out for signs of a UTI, especially if she's had a catheter. UTIs frequently cause delirium symptoms in the elderly, and they mimic dementia. 

[habuspasha]

I'm sure no two cases are the same, but I can tell you a few things I've learned caring for my wife in New York who does have dementia (diagnosed ten years ago and is now immobile).

1.  It is enormously preferable to keep the patient at home if possible.  In the US, institutions established that during covid.  Even at home, 4-5 years ago my wife would sometimes say (she was still talking) she wanted to go home (meaning her bedroom). 

2.  Continuity of setting and care is also preferable.  Two or three constant care givers is better than different ones sent each day.

3.  It's very important to have care-givers who can engage patient, not just do the tasks.

4.  Don't assume there is nothing going on in her mind.  Don't talk baby-talk.  She hears everything and processes more than you think, even if she is not talking.

5 Try to keep her exercising however is suitable.

[Kinnock]

4 hours ago, Polar Bear said:

Are you sure she's not just doped up on painkillers and/or sedatives? It's possible to have ventilation without sedation, but it's unusual because it's a pretty unpleasant procedure. 

Also, when she's out of hospital (or while she's there if you aren't confident about the care she is getting), watch out for signs of a UTI, especially if she's had a catheter. UTIs frequently cause delirium symptoms in the elderly, and they mimic dementia. 

Good points, thank you.  The only medication is Amiodarone for her heart .... no pain killers.

[Kinnock]

3 hours ago, habuspasha said:

I'm sure no two cases are the same, but I can tell you a few things I've learned caring for my wife in New York who does have dementia (diagnosed ten years ago and is now immobile).

1.  It is enormously preferable to keep the patient at home if possible.  In the US, institutions established that during covid.  Even at home, 4-5 years ago my wife would sometimes say (she was still talking) she wanted to go home (meaning her bedroom). 

2.  Continuity of setting and care is also preferable.  Two or three constant care givers is better than different ones sent each day.

3.  It's very important to have care-givers who can engage patient, not just do the tasks.

4.  Don't assume there is nothing going on in her mind.  Don't talk baby-talk.  She hears everything and processes more than you think, even if she is not talking.

5 Try to keep her exercising however is suitable.

Thank you for the great tips.  My wife is determined to care for her at her Mother's home, which unfortunately for me, is 400km from where I live and work.  

 

I know I'm being selfish, but her Mother abandoned her daughter when she was 7 years old, so in my mind she's lucky to get such devotion from her youngest daughter.  

 

I'll visit when I can to support my wife, but due to my work that may be infrequent.

[retarius]

My mother had it. She became impossible to live with, She had days of violent actions and ugly, racist  language; and seemingly no memory of them at all afterwards. I took partial care of her about 6 months a year, she was forever throwing me out of her house, calling the police and so on. She was eject from hospital several times for racially abusing nursing staff including physical attacks. It was really, really bad. I guess the family, my brother and I, did not realise. If I had my time again I would have had her committed. She used to call my wife the 'Japanese slut'. It was awful. I hope Sheryl is right and that she is simply recovering from her stroke and that she has an uneventful recovery. 

[motdaeng]

2 hours ago, retarius said:

My mother had it. She became impossible to live with, She had days of violent actions and ugly, racist  language; and seemingly no memory of them at all afterwards. I took partial care of her about 6 months a year, she was forever throwing me out of her house, calling the police and so on. She was eject from hospital several times for racially abusing nursing staff including physical attacks. It was really, really bad. I guess the family, my brother and I, did not realise. If I had my time again I would have had her committed. She used to call my wife the 'Japanese slut'. It was awful. I hope Sheryl is right and that she is simply recovering from her stroke and that she has an uneventful recovery. 

 

it sounds like my mother, we took 5 years care of her, she lived with us in our home. but i and my family couldn't anymore,

now she lives in an "alzheimer home"! we do visit her regularly. our relationship to my mother is now better than before ...

even her dementia has worsen ... it was after 5 years the right decision, our health has started to suffer ...

 

 

[Sheryl]

7 hours ago, Kinnock said:

Thank you for the very helpful and wise advice. 

 

We've already arranged for the Mother's house to be improved (basically rebuilt) to make living on the ground floor possible, and if she's coming home we'll order a proper hospital bed etc .... but I think I"m just disappointed that my wife seems to have taken on the total responsibility when there's three older siblings doing nothing to help. 

 

I guess I was looking for a valid reason to not let my wife take on the tough challenge of being a carer.  

 

I think it may be Thai culture that the youngest daughter does all the work .... or maybe just the daughter with a foreign husband.

 

Not always the youngest daughter. Many factors go into who in the family does what.

 

Perhaps the other siblings have other commitments that preclude being fulltime caregiver. Or perhaps your wife simply has the bigger heart. 

 

You don't want to get too much in the middle between your wife and her family but perhaps you could gently suggest that the other siblings chip in to pay for live-in household help. Split 3 ways would not be that much. Not reasonable to expect your  wife to keep house, cook, shop and care for her Mom single handedly. She'll need at least one other pair of hands. 

 

The situation will evolve one way or the other. Her Mom's condition may continue to improve. Or her Mom may not live that long (likely a thought in your wife's mind in deciding to go so far away). You and your wife can reappraise options further down the road depending on what happens. 

 

For now just be supportive  

[Dan O]

14 minutes ago, Sheryl said:

Not always the youngest daughter. Many factors go into who in the family does what.

 

Perhaps the other siblings have other commitments that preclude being fulltime caregiver. Or perhaps your wife simply has the bigger heart. 

 

You don't want to get too much in the middle between your wife and her family but perhaps you could gently suggest that the other siblings chip in to pay for live-in household help. Split 3 ways would not be that much. Not reasonable to expect your  wife to keep house, cook, shop and care for her Mom single handedly. She'll need at least one other pair of hands. 

 

The situation will evolve one way or the other. Her Mom's condition may continue to improve. Or her Mom may not live that long (likely a thought in your wife's mind in deciding to go so far away). You and your wife can reappraise options further down the road depending on what happens. 

 

For now just be supportive  

As usual Sheryl gives accurate effective advice and information. There are a variety of family dynamics that go on behind the scene that are never seen and may not be understood by foreigners because of culture. Every family dynamic is different.  I am in a similar situation as my FIL has advanced Parkinsons, cant speak much but can walk slowly and unsteady with a walker, he also has a separate issue with his esophagus being damaged and reduced in size due breathing smoke from burning plastics for 30 year so has a breathing tube and has to also us a feeding tube. I've made him some walkways so he can slowly go feed the dogs and fish in the pond, his 2 passions and enjoyment.  MIL is 86 and thinks she's 20 and can do whatever work around the house she needs to but lasts 20 minutes because of age and high blood pressure and diminished mental cognizance and has to lay down for a couple hours to recoup. I then have to go and undo whatever new project she started, but I wont stop her as that's what keeps her going is thinking she's still running the family and contributing. All the neighbors know the situation and help watch out as do the stores if MIL tries to spend money or order things. They are polite, take her request but then call us and let us know and never take advantage, which they easily could. They both live with us on the farm full time and wifey does almost all the physical care of both, I help where and when I can and try to fit the farming tasks in between every other issue going on as well as taking our daughter to school and mall outings and teenage stuff (which she hates dad being there) to keep her life as normal as possible. We are fortunate that my pension and savings cover living expenses but the farm suffers from lack of sufficient time. Extended family show up randomly with "mysterious spare" time and nothing to do and pitch in, which is great. Wifey has 2 sisters and 2 brothers that live in BKK and we live in NST, 12 hours away by car. They all send money every month to help as the farm isnt financially productive since all these issues and they all take turns coming at least 1 time a month for a week or so to help with care and rotate their visits and give the wife a badly needed break. We have the best situation possible under these circumstances that are completely F'd  but its still extremely straining on everyone. No one complains and we do our best to try to make them comfortable and feel like they still have a "good life" which I think is the least anyone should do. We have our bad days mentally but always come back to this is what families are suppose to be like, not the 2024 version of turning a blind eye because its not convenient. It wont last forever and at some point after they're gone no one will have any regrets or feel ashamed that we didnt give them the best life we could. I wrote this as others go thru the same or similar or worse variants of life like this and it seems hopeless and overwhelming some times. Your situations may be new and unique to you but there are ways thru it that can make it workable. Never be afraid to speak up or ask for help or support if you think you need it, someone will answer.

[donmuang37]

14 hours ago, Kinnock said:

Thank you for the very helpful and wise advice. 

 

We've already arranged for the Mother's house to be improved (basically rebuilt) to make living on the ground floor possible, and if she's coming home we'll order a proper hospital bed etc .... but I think I"m just disappointed that my wife seems to have taken on the total responsibility when there's three older siblings doing nothing to help. 

 

I guess I was looking for a valid reason to not let my wife take on the tough challenge of being a carer.  

 

I think it may be Thai culture that the youngest daughter does all the work .... or maybe just the daughter with a foreign husband.

 

My mother-in-law, who is in her 90s, has total dementia, incontinence and is being fed via a tube.  She stayed with my wife's brother & his wife for quite a while, but became a serious problem: Kept the up at night because she didn't sleep until 4 or 5 in the morning, periodically go angry and broke furniture, etc.  We finally had to put her in a nursing home as the family couldn't care for her at home.  There are 7 kids; 2 boys and 5 girls.  My wife, the second oldest, and her youngest sister are the only ones supporting her.  "I have no money."  "I'm too busy to visit her."  

 

So, it seems to be normal in Thailand that some of the kids do nothing to support their parents. I know of other families where this is the case, too.  And since my wife has a farang husband, of course she is expected to pay.  Of course!  🙂

[Kinnock]

2 hours ago, donmuang37 said:

My mother-in-law, who is in her 90s, has total dementia, incontinence and is being fed via a tube.  She stayed with my wife's brother & his wife for quite a while, but became a serious problem: Kept the up at night because she didn't sleep until 4 or 5 in the morning, periodically go angry and broke furniture, etc.  We finally had to put her in a nursing home as the family couldn't care for her at home.  There are 7 kids; 2 boys and 5 girls.  My wife, the second oldest, and her youngest sister are the only ones supporting her.  "I have no money."  "I'm too busy to visit her."  

 

So, it seems to be normal in Thailand that some of the kids do nothing to support their parents. I know of other families where this is the case, too.  And since my wife has a farang husband, of course she is expected to pay.  Of course!  🙂

Yes .... in our case the older sisters seem to feel they're privileged because they were born earlier, so the younger sister with the 'rich' husband can do the real work, while they make Royal Visits.

 

Once we know if she can go back home, I think paid help may be the solution ..... either to look after her Mothet .... or me 😄

[freedomnow]

Care home. My dad had it, it was terrible way to go..eventually the urge to eat even goes.

[howerde]

Dementia is very distressing and unpleasant for the carers, my mother felt unwell after a large amount of antibiotics, she had been a nurse so she knew something was wrong, the doctors just told her nothing wrong just age, after 3 or 4 months she started having tests, it could not be a stroke/Alzheimer's/dementia, all to quick, then after 6 months they said yes it is dementia, we all said cant be, they said yes  'rapid onset vascular  dementia' she passed away within 2 years

[Kinnock]

1 hour ago, howerde said:

Dementia is very distressing and unpleasant for the carers, my mother felt unwell after a large amount of antibiotics, she had been a nurse so she knew something was wrong, the doctors just told her nothing wrong just age, after 3 or 4 months she started having tests, it could not be a stroke/Alzheimer's/dementia, all to quick, then after 6 months they said yes it is dementia, we all said cant be, they said yes  'rapid onset vascular  dementia' she passed away within 2 years

So sorry to hear that.  Must have been a very difficult time.

 

It's currently distressing for my wife when her Mother only recognises her for a few seconds, then she seems to forget everyone again.  

[Kinnock]

Just an update which may be of interest to anyone else caring for an elderly relative, and to see if anyone has any more useful advice .....

 

Over three weeks since her stroke, and still in ICU and on a ventilator.  The nurses remove the ventilator daily to try to strengthen her natural breathing, but she gets exhausted quickly.

 

She did not serm to recognise her relatives when they visited, and while she appeared to recognise my wife during her twice daily visits - when my wife took a few days break from the visits (to reassure herself that I've not managed to destroy the house while she's been away), her Mother did not recognise her when she resumed the daily visits.

 

She seems to have no long term memory.  Although she seems stable, probably due to the good nursing care and the equipment.

 

I'm still concerned about the practical aspects of long term care.  The hospital want to move her from the ICU to a local hospital, and then to her home.  The rest of the family made one 'royal visit' then went back home ..... and while my wife is learning about how to care for her Mother, I'd like my wife back!

 

I also have a concern about the long term costs .... the rest of the family is claiming poverty 🤨