Live in Respite Care for two parents both with Alzheimers...

[Flo35]

Live in Respite Care for two parents both with Alzheimers...

Hi everyone. My first post on here but not the first time I've looked. I've found this site really helpful over the last year or so as both my parents have are moving forward with their own Alzheimers condition.

Mum, being the organiser and rock of the family, realised something was going wrong with her memory back in 2014 and took herself off to get checked out, she was diagnosed in 2015.

My dad, the ruler but not the 'doer', was diagnosed at the beginning of 2017. I think because his speech wasn't affected, and he wasn't being challenged in any way to do anything at all really, like the shopping, bills, appointments, car tax, cleaning, cooking, washing etc... he went undetected for quite a long time (a generational thing!) He is actually further advanced than my mum.

My brother and I have been keeping a closer and closer eye on them over the last couple of years. We had carers in for an hour or so once a day to make sure they were having tablets and eating etc and then we would go in too to check on them.

On 2 January late at night we had a call from my dad. He was hallucinating quite wildly and was up around the house trying to ring the police to get them to come and stop the marauding mob outside from getting in. He was really agitated and upset. I calmly took him to look out of every window to show him all was ok. He eventually went back to sleep but obviously mum was very upset and frightened. He was like this for three days - but no urine or chest infection.

Suddenly after a few days, he woke up and everything was 'ok' again - although not where he'd been the week before. They really needed someone with them all the time.

2 Days later, they both fell in the house when I was there! Mum trying to help my dad - thankfully nothing was broken and I was quick on the scene as I was in another room at the time, to get them up and check them over. This obviously didn't help my dad.

Then a couple of days later - my dad started with really heavy bleeding from his penis... (he wears a Tena 24/7 so thankfully it was all contained) An out of hours doctor, scans at hospital and other checks as well as some antibiotics proved that there was nothing sinister and was probably just a burst blood vessel from his enlarged prostate which he does take medication from. After about 5 days the bleeding ceased. Obviously keeping an eye on things...

During this time, I got more and more exhausted as I was not getting good sleep, up and down all night changing my dad etc. I was on the go pretty much 24/7 with the two of them. They both now need help with personal care, dressing and they need someone to cook, make drinks etc etc. I got a chest infection but carried on. Mum then got my chest infection and went off eating for a week and was really poorly and down. She has now recovered but isn't where she was beforehand either. It was then I realised that I still needed to get some extra help in so that I could get some little breaks and reclaim some of my life, and also, if I went down we were all scuppered, I needed to look after my own help.

So, I haven't been home to my other half since then. Bless him, he's very understanding and at least we don't have any kids to worry about but it does change everything. Leaving my home, leaving my job, leaving my income, leaving my social life to a greater degree, leaving my partner.

I'm a self-employed freelance artist and educator - making, selling and exhibiting my work as well as teaching in schools and galleries from primary through to adult and have had to put all this on hold. I have been building this business steadily over the last 10 years... building a solid reputation and earning reasonable money. I am slightly concerned that I will lose my spot on the creative scene and fitting back into that precarious world of freelancing will be harder to build back up again... hey ho. My brother is great - and we get on really well but he has a difficult life and 4 mouths to feed - he does what he can.

Like all of us in these situations, we have no idea how long this will all go on for. At the minute I feel that this is the right thing for me to do, it's what I want to do. I realise I need to be doing it until such a time as something happens to one of them and the next chapter will unfurl.

However, last summer I booked an exciting adventure with 3 girlfriends - 2.5 weeks away to Asia. Flights and everything booked. I was toying about whether I should still go or not. The parents have now all simmered down and are on a plateau but are still in need of daily help. The carers I had in do not do respite or overnights and I have been fretting about what to do for the best so that I can still get on holiday.

I have been in touch with Adult Social Care and am still awaiting assessments for both parents and for me as a Carer - however, time is running out and I doubt they would be able to help me sort cover out so soon and for so long.

I have also looked into Respite in Care Homes - tricky for a couple at reasonably short notice.. (going at Easter) as well as other things to consider. I have come to think that the least disruption for my parents would be to get a live in carer for 3 weeks (I don't think they do part weeks.) At least this would give me time to see that everyone settled in well before I departed. Also, for me to suddenly disappear and their surroundings to change would be hugely unsettling and disturbing for them.

So - lovely people out there - have any of you had any experience of respite live in carers? The positives the negatives, recommendations? Things to consider? I think I have to go on this holiday. I need the break. If I cancel it now and my parents go on another 10 years (unlikely but you never know!) I'll be 63 and maybe not up to as many adventures. My dad's 89 and my mum 83. My mum's mum did live to 100 but never diagnosed with Alzheimers and was pretty independent.

Oooh so I have rabbited a lot here - trying to write stuff down as quickly as I can before I go back to researching live in respite care for a couple with dementia. I think I need to act quickly to get it all set in place. I haven't yet told the parents I'm going - I don't want to worry them unduly until the time is right but I do keep dropping hints to mum that I will always make sure they are safe and looked after, whether by me, or someone else - they are my priority. Mum gets this. I am still very anxious to be leaving them but feel I need to have a life too... my dad's held me back in so many ways in my life and I have a fear he may be doing it again...

So - live in carers - thoughts/help/advice please!

Thank you all for reading to the end! - Sorry so much to read, I hope to hear back from those of you with respite care experience soon!

 

[Georgina63]

Hi @Flo35, sorry to hear about your parents. I also have both parents with dementia. We did arrange a live in carer to cover a holiday, but this proved challenging as Dad was not keen on having someone 24/7. If you feel your parents would be accepting of this, I would research a reputable company that will come and do a proper assessment, meeting you and parents beforehand. Questions to ask - experience of staff, what would happen in an emergency, what cover would there be if carer unwell, what other similar situations have they been in, how would they handle a situation where your Dad was hallucinating? It is a difficult ask for one carer to manage 2 people with dementia. Re respite, this was the option we followed for the next holiday and this was relatively successful, with parents able to be together though in our case it proved to tip the balance for us following the return home, as we anticipated it might (for the reasons you mention) , and shortly after my parents moved into a care home.
There are members on TP who have successfully managed live in care for 2 parents, so I hope you are able to search and find relevant threads, or get others to respond too. Hope it all works out, Georgina x

 

[Mannie]

Live in Respite Care for two parents both with Alzheimers...

Hi everyone. My first post on here but not the first time I've looked. I've found this site really helpful over the last year or so as both my parents have are moving forward with their own Alzheimers condition.

Mum, being the organiser and rock of the family, realised something was going wrong with her memory back in 2014 and took herself off to get checked out, she was diagnosed in 2015.

My dad, the ruler but not the 'doer', was diagnosed at the beginning of 2017. I think because his speech wasn't affected, and he wasn't being challenged in any way to do anything at all really, like the shopping, bills, appointments, car tax, cleaning, cooking, washing etc... he went undetected for quite a long time (a generational thing!) He is actually further advanced than my mum.

My brother and I have been keeping a closer and closer eye on them over the last couple of years. We had carers in for an hour or so once a day to make sure they were having tablets and eating etc and then we would go in too to check on them.

On 2 January late at night we had a call from my dad. He was hallucinating quite wildly and was up around the house trying to ring the police to get them to come and stop the marauding mob outside from getting in. He was really agitated and upset. I calmly took him to look out of every window to show him all was ok. He eventually went back to sleep but obviously mum was very upset and frightened. He was like this for three days - but no urine or chest infection.

Suddenly after a few days, he woke up and everything was 'ok' again - although not where he'd been the week before. They really needed someone with them all the time.

2 Days later, they both fell in the house when I was there! Mum trying to help my dad - thankfully nothing was broken and I was quick on the scene as I was in another room at the time, to get them up and check them over. This obviously didn't help my dad.

Then a couple of days later - my dad started with really heavy bleeding from his penis... (he wears a Tena 24/7 so thankfully it was all contained) An out of hours doctor, scans at hospital and other checks as well as some antibiotics proved that there was nothing sinister and was probably just a burst blood vessel from his enlarged prostate which he does take medication from. After about 5 days the bleeding ceased. Obviously keeping an eye on things...

During this time, I got more and more exhausted as I was not getting good sleep, up and down all night changing my dad etc. I was on the go pretty much 24/7 with the two of them. They both now need help with personal care, dressing and they need someone to cook, make drinks etc etc. I got a chest infection but carried on. Mum then got my chest infection and went off eating for a week and was really poorly and down. She has now recovered but isn't where she was beforehand either. It was then I realised that I still needed to get some extra help in so that I could get some little breaks and reclaim some of my life, and also, if I went down we were all scuppered, I needed to look after my own help.

So, I haven't been home to my other half since then. Bless him, he's very understanding and at least we don't have any kids to worry about but it does change everything. Leaving my home, leaving my job, leaving my income, leaving my social life to a greater degree, leaving my partner.

I'm a self-employed freelance artist and educator - making, selling and exhibiting my work as well as teaching in schools and galleries from primary through to adult and have had to put all this on hold. I have been building this business steadily over the last 10 years... building a solid reputation and earning reasonable money. I am slightly concerned that I will lose my spot on the creative scene and fitting back into that precarious world of freelancing will be harder to build back up again... hey ho. My brother is great - and we get on really well but he has a difficult life and 4 mouths to feed - he does what he can.

Like all of us in these situations, we have no idea how long this will all go on for. At the minute I feel that this is the right thing for me to do, it's what I want to do. I realise I need to be doing it until such a time as something happens to one of them and the next chapter will unfurl.

However, last summer I booked an exciting adventure with 3 girlfriends - 2.5 weeks away to Asia. Flights and everything booked. I was toying about whether I should still go or not. The parents have now all simmered down and are on a plateau but are still in need of daily help. The carers I had in do not do respite or overnights and I have been fretting about what to do for the best so that I can still get on holiday.

I have been in touch with Adult Social Care and am still awaiting assessments for both parents and for me as a Carer - however, time is running out and I doubt they would be able to help me sort cover out so soon and for so long.

I have also looked into Respite in Care Homes - tricky for a couple at reasonably short notice.. (going at Easter) as well as other things to consider. I have come to think that the least disruption for my parents would be to get a live in carer for 3 weeks (I don't think they do part weeks.) At least this would give me time to see that everyone settled in well before I departed. Also, for me to suddenly disappear and their surroundings to change would be hugely unsettling and disturbing for them.

So - lovely people out there - have any of you had any experience of respite live in carers? The positives the negatives, recommendations? Things to consider? I think I have to go on this holiday. I need the break. If I cancel it now and my parents go on another 10 years (unlikely but you never know!) I'll be 63 and maybe not up to as many adventures. My dad's 89 and my mum 83. My mum's mum did live to 100 but never diagnosed with Alzheimers and was pretty independent.

Oooh so I have rabbited a lot here - trying to write stuff down as quickly as I can before I go back to researching live in respite care for a couple with dementia. I think I need to act quickly to get it all set in place. I haven't yet told the parents I'm going - I don't want to worry them unduly until the time is right but I do keep dropping hints to mum that I will always make sure they are safe and looked after, whether by me, or someone else - they are my priority. Mum gets this. I am still very anxious to be leaving them but feel I need to have a life too... my dad's held me back in so many ways in my life and I have a fear he may be doing it again...

So - live in carers - thoughts/help/advice please!

Thank you all for reading to the end! - Sorry so much to read, I hope to hear back from those of you with respite care experience soon!

Hello Flo, sorry that life is so tough for you, and yes you most certainly do deserve to live your dreams by going on your big trip! If you get your batteries recharged you will be able to make better decisions going forward.

I have both parents with Alzheimer's, they had live in care for 2 years, but when my fathers lost his mobility it became difficult to find a carer who would be able to look after them both and deal with lots of visits from extra carers in the day and evening , to help him to the toilet etc.

For live in care, especially respite, my recommendation would be to work hard with the care company on the two care plans, as this will be your way of ensuring that you are getting the care you want and they need, while you are away. Ideally you need good care plans and then to test them out before you go. For example the respite care could be engaged for 3 days before you go, so that you can test them out and change the fine detail if needed.

Another reason that we took the decision we did to move to a CH ,which was not when one of them was having a health crisis, was to enable us to find a care home that would take both of them, to allow them to be together in their care home. Not all care Homes will have room for two people at any one time. This is why it can be better to organise this permanent move while they are both relatively well. You also need extra time, to get a CH that is a "best match " for both their needs.

You might have difficulty getting respite care organised by social services , in time for you holiday, it might be better to go private for speed of organising it, as , it is already a tight deadline.

I hope it all goes to plan!

PS I might add that my parents settled into their home much better than we anticipated, probably because they were together. They are very well looked after and have had lovely 61st and 62nd wedding anniversaries there, with tons of cake! Looking back it was a good decision but the hardest we had to make.

 

[Flo35]

Hi @Flo35, sorry to hear about your parents. I also have both parents with dementia. We did arrange a live in carer to cover a holiday, but this proved challenging as Dad was not keen on having someone 24/7. If you feel your parents would be accepting of this, I would research a reputable company that will come and do a proper assessment, meeting you and parents beforehand. Questions to ask - experience of staff, what would happen in an emergency, what cover would there be if carer unwell, what other similar situations have they been in, how would they handle a situation where your Dad was hallucinating? It is a difficult ask for one carer to manage 2 people with dementia. Re respite, this was the option we followed for the next holiday and this was relatively successful, with parents able to be together though in our case it proved to tip the balance for us following the return home, as we anticipated it might (for the reasons you mention) , and shortly after my parents moved into a care home.
There are members on TP who have successfully managed live in care for 2 parents, so I hope you are able to search and find relevant threads, or get others to respond too. Hope it all works out, Georgina x

Hi Georgina63

Thanks very much for getting back so quickly and I'm sorry to hear that you are in a similar position with both your parents. I think I'm definitely going to go down the reputable company route. Thankfully, my dad seems to have finally got used to other people coming in with the different carers we've had - it was a struggle at first, but he is now very accepting of new comers in general and he enjoys the attention. Mum I think sometimes finds it hard as she realises that she is no longer able to do everything she once did. She never complains though and always tries to put on a brave face. She's a trouper!

Thanks for the suggestions of questions to ask, good one.

I am not telling the parents about the holiday or the live in care until it's in place - they need the care and it will be the only option. So at what point did you tell your parents you were going away and that there would be someone coming to live in? I'm dreading it! Mum will understand that I have to go but my dad, as he has always done will question... 'Is it really necessary that you have to go? I thought we were your priority'! He's the one I have to tread carefully with... quite a selfish man.

I'm hoping that the experience of me being away and them with a live in carer will be a positive one for them. I am sure it will be weird for me to come back into their lives for them, but it may, as you say - move us all forward into thinking about moving them both in to a care home.

Thanks once again for your response. I think I may be on TP a lot more these days now I've moved in.

Good luck with your two
Flo35 x

 

[Flo35]

Hello Flo, sorry that life is so tough for you, and yes you most certainly do deserve to live your dreams by going on your big trip! If you get your batteries recharged you will be able to make better decisions going forward.

I have both parents with Alzheimer's, they had live in care for 2 years, but when my fathers lost his mobility it became difficult to find a carer who would be able to look after them both and deal with lots of visits from extra carers in the day and evening , to help him to the toilet etc.

For live in care, especially respite, my recommendation would be to work hard with the care company on the two care plans, as this will be your way of ensuring that you are getting the care you want and they need, while you are away. Ideally you need good care plans and then to test them out before you go. For example the respite care could be engaged for 3 days before you go, so that you can test them out and change the fine detail if needed.

Another reason that we took the decision we did to move to a CH ,which was not when one of them was having a health crisis, was to enable us to find a care home that would take both of them, to allow them to be together in their care home. Not all care Homes will have room for two people at any one time. This is why it can be better to organise this permanent move while they are both relatively well. You also need extra time, to get a CH that is a "best match " for both their needs.

You might have difficulty getting respite care organised by social services , in time for you holiday, it might be better to go private for speed of organising it, as , it is already a tight deadline.

I hope it all goes to plan!

PS I might add that my parents settled into their home much better than we anticipated, probably because they were together. They are very well looked after and have had lovely 61st and 62nd wedding anniversaries there, with tons of cake! Looking back it was a good decision but the hardest we had to make.

Hi Mannie

Many thanks for getting in touch and all the info and good advice.

I'm definitely going to get the carers in a few days before I go to test it out - a sound plan.

I hear what you're saying about getting them both into a care home whilst they are both reasonably ok - this makes good sense. I have looked around a few dementia/residential care homes.

One Dementia Care home came up with some interesting questions to ponder which made me think... 'how would your dad be if other residents started to come on to your mum?' (obviously when barriers and social space spaces have broken down) - my mum and I have always had to put up with my dad's flirtations (nothing ever coming of it) but if it was the other way round and men were chatting to mum (or me in the past for that matter) he absolutely hated it! Could be interesting!

Also, they said that they wouldn't put the two of them into the same bedroom as as time goes on - and one of them is receiving personal care or dressing assistance - the other might find this odd and distressing for someone else to be 'handling' their other half. Things I'd not really thought of in the past but thinking about it - they are valid points to think of. Maybe two rooms next to each other - but like you say - very hard to find space for a couple sometimes. After my holiday, I will be continuing my search for a suitable CH that will be able to take two - whilst they are still pretty ok and we don't end up having to do it in a panic situation.

The cost of them both having a room each in a care home would soon see their savings... and house disappear. My other thought is that, if the live in respite care works well - then I could just make sure that I book more respite weeks in for them at home while I take a break every few months or so. However, this could be more unsettling than its worth.

One step at a time - this weeks conundrum is to sort out live in care so I can go on holiday...

Thanks Mannie and I'm glad you got your two happily settled into a home.
Flo35
x

 

[Georgina63]

Hi Georgina63

Thanks very much for getting back so quickly and I'm sorry to hear that you are in a similar position with both your parents. I think I'm definitely going to go down the reputable company route. Thankfully, my dad seems to have finally got used to other people coming in with the different carers we've had - it was a struggle at first, but he is now very accepting of new comers in general and he enjoys the attention. Mum I think sometimes finds it hard as she realises that she is no longer able to do everything she once did. She never complains though and always tries to put on a brave face. She's a trouper!

Thanks for the suggestions of questions to ask, good one.

I am not telling the parents about the holiday or the live in care until it's in place - they need the care and it will be the only option. So at what point did you tell your parents you were going away and that there would be someone coming to live in? I'm dreading it! Mum will understand that I have to go but my dad, as he has always done will question... 'Is it really necessary that you have to go? I thought we were your priority'! He's the one I have to tread carefully with... quite a selfish man.

I'm hoping that the experience of me being away and them with a live in carer will be a positive one for them. I am sure it will be weird for me to come back into their lives for them, but it may, as you say - move us all forward into thinking about moving them both in to a care home.

Thanks once again for your response. I think I may be on TP a lot more these days now I've moved in.

Good luck with your two
Flo35 x

We met with the carer at my parents house about a month before to allow time for the carer to meet them and for us to try to ensure that it would work out. Dad wasn't entirely keen, but we explained that we needed a break\holiday and that the carer would be able to help look after Mum as she needed extra help. It worked out ok until the end of the stay when Dad got agitated and aggressive. Hindsight is a wonderful thing and in our case I think the carer in question, though 'qualified' wasn't able to effectively manage the situation. Unfortunately the dynamics of having both parents with Alzheimer's can prove especially complicated! Hope you find a good solution and enjoy your adventure and above all, try not to allow your Dad to make you feel bad about going. I know, easier said than done! Gx

 

[Flo35]

We met with the carer at my parents house about a month before to allow time for the carer to meet them and for us to try to ensure that it would work out. Dad wasn't entirely keen, but we explained that we needed a break\holiday and that the carer would be able to help look after Mum as she needed extra help. It worked out ok until the end of the stay when Dad got agitated and aggressive. Hindsight is a wonderful thing and in our case I think the carer in question, though 'qualified' wasn't able to effectively manage the situation. Unfortunately the dynamics of having both parents with Alzheimer's can prove especially complicated! Hope you find a good solution and enjoy your adventure and above all, try not to allow your Dad to make you feel bad about going. I know, easier said than done! Gx

Thanks Georgina

A couple of the national care companies I have spoken to have said they will come and do the assessment but that I wouldn't be able to meet the carer before they came in?! This all sounds a bit bonkers as its very much down to personalities as you know. Was your carer through a company of a private individual? Any recommendations gratefully received. I shall continue my search today but will need to book someone very soon so that they have the time to source the correct carer, as close as possible!

This feels very much like an adventure - but boy will I enjoy Vietnam - I will try not to worry too much - I have to trust it will all be ok. At least my brother will be around to keep an eye occasionally.

My dad know doubt will make me feel bad - but I'll get over it - just as I'm sure he will do... hopefully. My main concern is always that they are happy and safe. They are my main concern whether I'm able to be with them or not. Mum knows that, and hopefully so will my dad.

I'll keep you posted...

Flo x

 

[Georgina63]

Thanks Georgina

A couple of the national care companies I have spoken to have said they will come and do the assessment but that I wouldn't be able to meet the carer before they came in?! This all sounds a bit bonkers as its very much down to personalities as you know. Was your carer through a company of a private individual? Any recommendations gratefully received. I shall continue my search today but will need to book someone very soon so that they have the time to source the correct carer, as close as possible!

This feels very much like an adventure - but boy will I enjoy Vietnam - I will try not to worry too much - I have to trust it will all be ok. At least my brother will be around to keep an eye occasionally.

My dad know doubt will make me feel bad - but I'll get over it - just as I'm sure he will do... hopefully. My main concern is always that they are happy and safe. They are my main concern whether I'm able to be with them or not. Mum knows that, and hopefully so will my dad.

I'll keep you posted...

Flo x

Hi Flo
Our carer came through a personal recommendation. Seemed right at the time but based on experience I would recommend going with a well known company. Gx

 

[Flo35]

Hi Flo
Our carer came through a personal recommendation. Seemed right at the time but based on experience I would recommend going with a well known company. Gx

Ok - thanks Georgina63... I'm on to it! Wish me luck - fingers crossed and everything to find someone lovely!
Flo35x