New member seeking advice on care needs assessment

[Gigiraton]

Hello.
My mother is 87 yo and has Alzheimer’s. She struggles with some daily tasks such as cooking and ironing but seems ok with others such as washing her bed linen. She doesn’t shower or change her clothes regularly unless prompted and doesn’t go out alone. When out with others she prefers not to be away from home for long.
For some years now my sisters have visited every week and one has, until recently, stayed over with her.
In the last few months the sister who stayed over has found it increasingly difficult to continue to do so and so she arranged for her to spend a trial period at a care home. After 2 weeks of the trial period, She has now decided that our mother will be staying permanently. My mother is unaware of this decision, my brothers and sisters are. For my part, I am not comfortable with this. I am not sure that my mothers condition is at a stage where she can’t be a party to the making of that decision and I feel that if she can, she should be. She has stated regularly that she is ok there but that she wants/expects to go home. She has not at any point to my knowledge suggested that she wants to stay there.
My concern is that other options, such as care in the home, have not been given due consideration or tried.
My sister, who has power of attorney, became agitated with me when I voiced my concerns. One of my brothers did likewise.
As much as I would not seek to cause any rifts in the family, I believe that my mother’s wishes should be considered and other options given due consideration.
Any advice would be much appreciated.

 

[Louise7]

Welcome to the forum. Based on what you have posted your mother is at the stage where she needs 24hr care. Your sister has been staying overnight and is now finding it difficult to do so and it sounds like she may have 'carer burnout', having reached a point where she can't continue to care for your mother at the level she has been doing so. Caring takes a real toll on the carer's health and well being so as your mother needs 24hr care the available options are either a live in carer or a care home. Live in care will usually require two carers working in shifts, unless family are happy to step in and cover when the carer needs time off. Plus this invariably costs more than a care home and there is the added issue of having to sort out national insurance, contracts etc if employing a live-in carer directly rather than via an agency.

You refer to your sisters visiting your mother every week but you don't say if you are also doing the same? It's common for family who see the person with dementia less regularly to think that they are better than they are - it's those who see them on a regular basis that are more aware of their care needs.

It is very common for those with dementia to say that they want to go home but this is a state of mind meaning a pre-dementia place where they were safe and not confused. Sometimes it's a childhood home that's being referred to but it's rarely the actual property that they lived in prior to going into the care home. There comes a point when what the person with dementia's needs is more important than what they want, and your sister, who has power of attorney, has had to make that decision based on your mother's best interests. She is now in a place where she is safe and has a team of people looking after her 24hrs and has regularly stated that she is OK there. I think that unless you are in a position to take on a more hands-on role in the 24hr care of your mother yourself then I'm not sure what can be gained by continuing to press for other options to be considered and voicing your concerns, as well meaning as they are. As you don't wish to cause any rifts in the family then being supportive of your sister's decision, which will have been a difficult one for her to make, and visiting your mother regularly so that you can see for yourself the level of care that she is receiving, would in my opinion be the better option.

 

[Hard Work]

Sorry to jump in but feel this is really good and sensible advice I hope that I can be as positive when my lovely husband is at this stage. There comes a time when we can do no more despite every effort we make to keep our loved one at home. I do hope you can support your sister in this next stage of you mums journey.
Kind regards
Shirley/hard work

 

[Jessbow]

Are you doing the caring? Are you staying over with her for a week at a time to maintain the level of care she needs?

is a carer for an hour 4 times a day going to be sufficient? 24 hour home care costs an arm and a leg.

is your Mother able to make rational decision about her own well being? i

Yes its a big step, but sometimes a neccesary one, which she may not- on the surface- like.
But for her own well being AND everyone elses, that is the way it has to be sometimes

 

[Sarasa]

Hi @Gigiraton , I can understand where you are coming from. My mother has been in a care home for three months and is not happy, and wants to go home. Where she wants to go to is the place she left, though she can't remember where it was and can't remember how unhappy she was there. She was also unsafe and needed to be somewhere with 24 hour care. My husband is of the opinion that I shouldn't have moved her until there was a crisis, she'd had an accident and was in hospital or she had been sectioned because she'd hit the neighbours during a psychotic episode for instance. I think the idea that the person with dementia (PWD) can cope better than they really can, is common with those that don't see them that often, specially if the PWD is good at putting on a 'show', (it's called hostess mode here) with those they don't see often.
It sounds from your post that you can't get to see her that much and that your sisters have been the principal carers. I think the best way forward is to support their decision, but to try and visit your mother regularly, If you then think there are problems with her care, that is a different matter.
I certainly felt very upset that my husband sounded like he wasn't supportive of the very difficult decision I'd made regarding my mother's care, though I know he didn't intend to upset me.

 

[Rosettastone57]

Hello.
My mother is 87 yo and has Alzheimer’s. She struggles with some daily tasks such as cooking and ironing but seems ok with others such as washing her bed linen. She doesn’t shower or change her clothes regularly unless prompted and doesn’t go out alone. When out with others she prefers not to be away from home for long.
For some years now my sisters have visited every week and one has, until recently, stayed over with her.
In the last few months the sister who stayed over has found it increasingly difficult to continue to do so and so she arranged for her to spend a trial period at a care home. After 2 weeks of the trial period, She has now decided that our mother will be staying permanently. My mother is unaware of this decision, my brothers and sisters are. For my part, I am not comfortable with this. I am not sure that my mothers condition is at a stage where she can’t be a party to the making of that decision and I feel that if she can, she should be. She has stated regularly that she is ok there but that she wants/expects to go home. She has not at any point to my knowledge suggested that she wants to stay there.
My concern is that other options, such as care in the home, have not been given due consideration or tried.
My sister, who has power of attorney, became agitated with me when I voiced my concerns. One of my brothers did likewise.
As much as I would not seek to cause any rifts in the family, I believe that my mother’s wishes should be considered and other options given due consideration.
Any advice would be much appreciated.

Excellent advice from other posters. In addition the fact that your mother thinks she is only in the care home on a temporary basis is also not unusual. Many carers myself included tell the person with dementia they are in the care home to recuperate or on doctor's orders with full knowledge that in fact that person is never going to return home. It smooths things over and causes less agitation for the person with dementia. I think that as you don't have POA and are not involved with the care, there's little you can do, other than be supportive

 

[Jenni_B]

My sister is sole carer for her husband who has Alzheimer's. He is 71. Earlier this year, for the first time, the most compassionate of his four grown-up children (who lives, works and has a family of her own in Spain) went to the UK to care for him for a week so my sister could have a holiday. It gave her a real (and exhausting) insight into just how dependent her dad has become, day and night. Something she could never appreciate through brief phone calls or short visits, during which he is able to fake relative 'normality'. Immediately afterwards, she told my sister (her step-mother) that there will be no resistance from her or her siblings, whenever my sister feels the time has come for their dad to be cared for in a home. This support has come as an enormous relief to my burnt-out sister, as that time is approaching, even though, unfortunately, her husband continues to believe he is quite fine, and will not want to go.

I'm sure your mother wouldn't have given your sister POA unless she trusted her to make the right decisions at the right times if she can't do so herself. And, as others have said, practical, realistic alternatives may be very limited and eye-wateringly expensive. For example, recent research into in-home 24/7 care with agencies local to my sister showed that (if family can't cover a carer's 2 or 3-hour break each day), costs range between £1,500 and £1,700 a week. That equates roughly to local homes at the "luxury" end of the scale. I'm sure costs vary from county to county, but it gives you an idea. I doubt the council would foot that bill if your mother can't.

If she does return to her own home after this trial period, I genuinely think it would be invaluable for everyone concerned, if you and your brother who's also uncomfortable with your sister's decision each stay with your mother 24/7 for at least a week, on your own. When you've seen and experienced first-hand what your sisters do, then you'll be better able to form a view as to what would be in your mother's best interests in the future.

It's a horribly hard time for everyone. Wishing you well.

 

[Lawson58]

Your mum is at quite an advanced age and has a diagnosis of Alzheimer's. She can do some things but there is a lot that she can't do.

You don't say how often you see her and if it is not too often, then you maybe not the best person to decide what the care should be. People with dementia frequently make statements about what they want without any understanding of how incompetent they really are.

I believe you should think about how you would feel if your mother had a fall or suddenly became unwell while on her own. There comes a time when your mothers needs become more important than what she thinks she wants and if your sister has POA, then she is fulfilling her responsibilities and perhaps it might be a good idea to support her.

 

[Rosettastone57]

Hello Lawson58,

My Mum is mid 80s with altzheimers, diagnosed a few years ago, but its progressed recently. Mum lives alone, she cant remember how to cook, or use any household appliances, only knows how to make a cuppa, and she is struggling with that now. She doesn't do housework anymore, we do her shopping and stock her fridge up with finger food and snack foods. We go in the evenings and make a hot meal for Mum. She attends daycare 3 days a week, other than that shes on her own. We work full time and cant look after her more than we do as we have our own families to look after. We haven't arranged carers yet, as shes been ok. But she is increasingly getting annoyed about living alone, has no concept of what time of day, or season it is, and has started ringing us up repeatedly for hours, saying she's fed up and no one visits. this week she asked me where's her mother, she isn't home from work yet. How do we know when its time for her to go into a care home?.

We're worried she may start to wander, or fall in the night. Shes recently got agrerssive and argumentative and gets agitated, which is when the phone calls start.

@MrsV My mother-in-law was like this, on her own in her own home. She had carers three times a day, she was self funding. I became concerned when she was spending too much time on her own, particularly at night. She began hallucinating at night and called the carelink line saying there was a man in her bedroom performing a sex act. The carelink called police who attended and of course there was no one. When she became incontinent and then couldn't remember where her bathroom was in her own home, my husband and I decided on a care home . Fate took a hand before we tried to organise it as she became ill and she went into hospital. She would have refused point blank to go into care, so we took this opportunity to organise it. She went straight from hospital. It's not when the carers were going in , it was when they weren't there. It's when a person is no longer safe.

 

[Lawson58]

Hello Lawson58,

My Mum is mid 80s with altzheimers, diagnosed a few years ago, but its progressed recently. Mum lives alone, she cant remember how to cook, or use any household appliances, only knows how to make a cuppa, and she is struggling with that now. She doesn't do housework anymore, we do her shopping and stock her fridge up with finger food and snack foods. We go in the evenings and make a hot meal for Mum. She attends daycare 3 days a week, other than that shes on her own. We work full time and cant look after her more than we do as we have our own families to look after. We haven't arranged carers yet, as shes been ok. But she is increasingly getting annoyed about living alone, has no concept of what time of day, or season it is, and has started ringing us up repeatedly for hours, saying she's fed up and no one visits. this week she asked me where's her mother, she isn't home from work yet. How do we know when its time for her to go into a care home?.

We're worried she may start to wander, or fall in the night. Shes recently got agrerssive and argumentative and gets agitated, which is when the phone calls start.

It sounds to me as if perhaps it is time for you to start looking at full time care for your mum. It will take time to get it all organised, finances sorted etc. Apart from her needs, it sounds as if you need to feel that she is safe and cared for so maybe that is the thing that is telling you it's time. She sounds as if she might enjoy having the company of others so worth investigating what might be possible.