Long distance caring.

[SAP]

My mum was diagnosed with Alzheimer’s over two years ago. She was prescribed Donepezil and I believe there was some improvement in her general well being , she was less anxious and more able to come to terms with the sudden death of my father which I think was a catalyst in her memory loss. Mum’s main issue has always been her ability to communicate. If she is stressed, she loses her words complete. She struggles to read and write ( she was an administrator for many years and an avid reader, so this is a real blow ) and she can not hold telephone conversations or understand answer machine messages. I live 300 miles away and visit regularly (6 weeks 0r so) and I have poa for finance and health/ welfare which we organised straight after dad passed away. So I manage all the bills, bank accounts and financial affairs. I also do on line shopping for her and arrange appointments or any work that needs doing on the house ( boiler services and the like) . I’m just wondering if anyone else is in a similar situation , people seem genuinely shocked that mum has no family near by to help but I can’t be the only one in this situation. Mum still lives on her own but as time goes on this is getting less viable. It would just be good to know we are not in an unique situation.

 

[Palerider]

My mum was diagnosed with Alzheimer’s over two years ago. She was prescribed Donepezil and I believe there was some improvement in her general well being , she was less anxious and more able to come to terms with the sudden death of my father which I think was a catalyst in her memory loss. Mum’s main issue has always been her ability to communicate. If she is stressed, she loses her words complete. She struggles to read and write ( she was an administrator for many years and an avid reader, so this is a real blow ) and she can not hold telephone conversations or understand answer machine messages. I live 300 miles away and visit regularly (6 weeks 0r so) and I have poa for finance and health/ welfare which we organised straight after dad passed away. So I manage all the bills, bank accounts and financial affairs. I also do on line shopping for her and arrange appointments or any work that needs doing on the house ( boiler services and the like) . I’m just wondering if anyone else is in a similar situation , people seem genuinely shocked that mum has no family near by to help but I can’t be the only one in this situation. Mum still lives on her own but as time goes on this is getting less viable. It would just be good to know we are not in an unique situation.

I was living 50 miles away from mum until it became obvious I needed to come home. So I moved back and at the time she was glad I did. I now commute a 100 mile round trip to work and back everyday to try to make a difference. This is slowly becoming harder, even though I now live with her and drive my self into the ground running back and to.

I think I live and function on the cusp of what is manageable, living further away would have made it impossible. Initially I didn't move back straight away but increased my visits, until it became obvious someone needed to be there just to reassure her (which she greatly appreciated) and also keep an eye. As time has gone by the disease has progressed, I moved in just over two years ago.

Its hard even for me with a commutable distance. You'll find many people will have different approaches to this, hopefully they'll give their version of how they cope with distance. Take care

 

[Sirena]

My mother is now in a care home, but prior to that there were a couple of years when she was still living at home on her own and increasingly unable to cope. I lived a long distance away and initially I did the same as you. But there came a point when she couldn't function alone in her daily life - while she seemed outwardly okay, she couldn't make a cup of tea, prepare food, use the washing machine. She also kept switching things off (like the boiler) and saying they didn't work.

So she had a social services assessment but she was well over the savings threshold so was self funding and they offered no help. There was never any question of me doing any hands-on caring so I arranged daily carers for her, 4 hours a day rising to 6 hours. They did everything needed - prepared meals, did her housework, took her shopping and to appointments. It worked well for about 18 months, but she reached a point where she was no longer safe on her own (she started wandering), and at that point I arranged for her to move to a care home near me. She's been there 15 months and is very content there.

 

[Lyd]

My MIL lived 200 miles away from all her children (each in a different direction) 12 months ago she moved to live near us (2 minute walk) it is so much easier though has not been pain free and has created some issues itself.

 

[Rosettastone57]

My mum was diagnosed with Alzheimer’s over two years ago. She was prescribed Donepezil and I believe there was some improvement in her general well being , she was less anxious and more able to come to terms with the sudden death of my father which I think was a catalyst in her memory loss. Mum’s main issue has always been her ability to communicate. If she is stressed, she loses her words complete. She struggles to read and write ( she was an administrator for many years and an avid reader, so this is a real blow ) and she can not hold telephone conversations or understand answer machine messages. I live 300 miles away and visit regularly (6 weeks 0r so) and I have poa for finance and health/ welfare which we organised straight after dad passed away. So I manage all the bills, bank accounts and financial affairs. I also do on line shopping for her and arrange appointments or any work that needs doing on the house ( boiler services and the like) . I’m just wondering if anyone else is in a similar situation , people seem genuinely shocked that mum has no family near by to help but I can’t be the only one in this situation. Mum still lives on her own but as time goes on this is getting less viable. It would just be good to know we are not in an unique situation.

No you are not in a unique situation. My mother-in-law lived on her own for many years and the last three years of her life were with dementia although she had mental health problems for many years before . The only family that she had who were remotely interested in her were my husband and myself her daughter had moved away abroad many years ago and had little contact with her. My mother-in-law lived quite near to us but nevertheless her situation developed very much like your describing with your mum .

My husband and I had lasting power of attorney both for finance and health and welfare. We had these in place before her diagnosis due to her previous mental health problems. It became obvious that she could no longer cope with planning and cooking her own meals. We employed carers who eventually came in three times a day to prepare food make her a drink and make sure she was generally ok. She was completely unable to cope with the slightest change of routine or difficulty. She quickly lost the capacity to use the washing machine so I eventually took over all the laundry . She lost the capacity to understand an oven she switched off the freezer and was unable to sort out the controls on the heating. Eventually she lost the capacity to use the telephone.

There was no one in the family including us who was prepared to take over any full-time caring. We were dependent on the care agency for most things. My mother-in-law was self-funding we never involved social services at any point. We recognised that she would need full-time care but she point-blank refused to go into a care home so we waited for a crisis to happen. She often used to ring because she misinterpreted things ,eg no longer recognizing her own clothes, particularly in the evening and her paranoia and anxiety increased. We felt we were just lurching from one crisis to another. Of course throughout all this as far as she was concerned there was nothing wrong with her.

Eventually she became ill last summer in the heat wave and went into hospital . We realised then this was our opportunity to get her into a home which is in fact what happened she went straight into a care home from hospital. This was the best decision we made both for her and for us as a family

 

[Lyd]

We realised then this was our opportunity to get her into a home which is in fact what happened she went straight into a care home from hospital. This was the best decision we made both for her and for us as a family

@Rossettastone57 It would help me to know a bit more if thats ok? we are in a similar situation MIL at home, ok with routine and us supporting much as you did in the early days, not wanting to go into a home. She'll be great at home for now with some additional support. I am curious, looking back what would you have said the point was on balance that care home was better than own home?

 

[Rosettastone57]

@Rossettastone57 It would help me to know a bit more if thats ok? we are in a similar situation MIL at home, ok with routine and us supporting much as you did in the early days, not wanting to go into a home. She'll be great at home for now with some additional support. I am curious, looking back what would you have said the point was on balance that care home was better than own home?

Hi @Lyd I will give you a bit more background to the sort of thing that my husband and I were dealing with. My husband at the time was working full-time and I was semi retired and as I have said previously we had no one else to help us other than the care agency.

My mother-in-law had mixed dementia but things started to really deteriorate about 6 to 8 months before she actually went into a care home. She began not to recognise us nor her familiar everyday carers . By this time she had also refused personal care for a number of years not allowing the carers to do anything other than wash her back in fact her hair had not been washed for 5 years ....yes you read that right. She could wash herself of sorts and as she didn't smell I didn't fret too much about it.

It was about the 6 months before she became ill and went into a care home that I had a discussion with my husband about the way forward with her. He recognised that she needed more support possibly in a care home . As she refused to go and in fact refused to go out of the house we would have had to dupe her in some way to get into a care home. My husband was not prepared to do this and of course my mother-in-law thought throughout all of this that there was nothing wrong with her.

In July last year the GP after a routine home visit to my mother-in-law organised a case conference with other health professionals about how to support her. My mother-in-law had become ill at that point with diarrhoea in her own home which the carers and us were having to clean up as she couldn't reach the toilet in time. Due to her symptoms the GP thought that there was a strong possibility that she might have something more serious other than simple sickness and diarrhoea.

In fact shortly after that visit she was admitted to hospital with severe dehydration after the carers found her in bed not responding very well. She was admitted to hospital with an infection and rehydrated she was discharged shortly afterwards and we organised an enhanced care package . Unfortunately the following day after her discharge she fell three times at home and we then realised that she could no longer cope at home on her own . One of the main tipping points was that she was unable to remember where her bathroom was in her own home that she had been living in for 10 years. Her cognitive decline was very steep after her hospital stay. She was readmitted to hospital and in the seven days that she was there we ran around trying to find a place for her in a care home which we did finally.

So the answer to your question is we were placed in a crisis situation although we have recognised well before that there were several tipping points . Firstly the inability to recognise family members the fact that she needed prompting to do everything even to drink glass of water. It isn't when the carers are there it's when the carers aren't there and in particular overnight was an issue. We decided that she was no longer safe in her own home her level of paranoia anxiety was greatly heightened she was vulnerable and she needed a team of people to look after her. She was also a high falls risk.

She lasted 6 weeks in the home and then peacefully passed away she was 93 years old. I think everyone has a different tipping point as to what they think is acceptable to be still in their own home or to move to a care home . Every carer or family has a different view . The decision we made for my mother-in-law was the best one for her and for us as a family it was the right decision and we don't regret it

 

[Sarasa]

@Lyd, my mother has recently gone into a home. In some ways the fact that she is still relatively fit and healthy for her ninety-one years was a contributing factor. She was rapidly getting to the stage where she wasn't safe on her own, and when she went out was liable to get herself into potential dangerous situations, drinking wine with random men in the local pub for example. She was very paranoid, and had regular run ins with the neighbours who she thought came into her flat and stole things. Both my brother and myself didn't live that near, and as I don't have a car getting there meant two trains and bus. Mum refused to countenance the idea of having any help in, because as far as she was concerned she was perfectly fine
The tipping point came when my brother became seriously ill and I was going on holiday. The fact that there would be no one to dash over if a crisis happened made me move her to a place near me for respite (lying through my teeth to get her there). We've now made this permanent. It is taking her a while to settle as she is so fit, so has much more mobility than the other residents on the dementia floor. She still sounds very articulate, and can have a fun conversation, but is getting more and more confused. She thinks her mum is still alive and that my dad is married to someone else. Her mum has been dead for over forty years and my dad for twenty. I'm happy she is somewhere safe and that there is someone making sure she eats properly.

 

[SAP]

Thank you for all the comments, it really helps to know others stories. Had a lovely chat with mum today , she knew what she had been doing and who with and had remembered to get her prescription sorted. I hold on to days like these.

 

[Lyd]

Thank you @Sarasa and @Rosettastone57 my MIL is living fairly well independently while refusing most help. She has an idea that a company runs her house which I have leveraged to get her oven cleaned and gas fire checked etc "the company organised it" and given the amount of resistance she has to being supported directly that feels like an achievement. She isnt ready for a home IMHO though others in the extended family disagree though she is deteriorating quite rapidly. It's hard work!