Both parents with dementia

[Maggie129!]

My sister and I have cared for our parents for 2-3 years . My Mother has Altzeimers ( early) and my Father has unspecified dementia. My sister and I both have difficult jobs and at first managed ok between us - it was all very organised ! but the last year unfortunately has been awful and both of us are burned out .It is affecting every aspect of our lives including our health . We’ve both had to reduce our hours at work and I’ve been called out of work many times by the carers for ‘emergencies’ .My managers have been very understanding so far , but I’m not sure for how much longer .

We pay for carers 4 times a day for Dad who is doubly incontinent ( due to prostate cancer , not dementia) , but despite the carers being amazing -they are having problems with staffing and frequently don’t turn up until gone 11 am and are constantly phoning me with various problems.

My Mum doesn’t think she needs carers and is refusing to have them .We have to prepare / cook all of their meals .Mum is very fussy about what she eats -so ‘meals on wheels ‘ and ready meals are not an option !!! Freshly cooked each time !! -then she doesn’t always eat them because she’s been ‘ snacking’ The repetitive conversations I have with Mum are finally driving me crazy !! because I’m so tired. !

My Dad is probably coming close to needing 24 hour care, but my Mum just wants to get out of the house and be sociable , which is difficult because we can’t leave Dad on his own for too long .They both have very different needs

I just don’t know where to go from here - we can’t cope anymore and I worry about them constantly. It’s got to a point where I have panic attacks when I walk down their drive - not knowing what I’m going to face ( they live 5 mins from me ) I know that it’s only going to get a lot worse .

 

[Bunpoots]

Welcome to the forum @Maggie129!

I’m afraid there does come a time when carers 4 times a day are simply not enough and it sounds as though your parents carers aren’t coping with their needs.

My dad had a lovely carer from having early dementia who I would have liked to have keep on for him but unfortunately she just couldn’t cope with him. The new carers from an agency were much better, seldom rang me if they had a problem, and usually turned up more or less on time. Do you think it might be worth trying a different carer agency - one that is well versed in dementia?

If I’m totally honest I think it might be time to start considering a carehome for both of them. I’m sure if your mum understood how much you were doing for her she wouldn’t want you continue with the level of care you and your sister are providing. Or perhaps your mum would be happy going to daycare where she would get a freshly cooked meal.

I lived only 5 minutes away from my dad and I remember that feeling of anxiety when I had to visit. I don’t think you’ll be able to carry on like this for much longer. Please, at least consider a couple of weeks respite so you can decide what to do next.

 

[canary]

Hello @Maggie129!

Dealing with both parents together is draining and I am not surprised that you and your sister are burned out.

I think that as your parents have such different needs it may be better to sort out their care independently and not as a couple now. Perhaps your dad might be better in a care home so that he will be looked after and then things could be put in place for your mum at home - possibly day care which will be a sociable occasion for her and keep her safe.

I would ask for a new needs assessment for both your parents and stress to SS that you can no longer meet their needs.

 

[Maggie129!]

Welcome to the forum @Maggie129!

I’m afraid there does come a time when carers 4 times a day are simply not enough and it sounds as though your parents carers aren’t coping with their needs.

My dad had a lovely carer from having early dementia who I would have liked to have keep on for him but unfortunately she just couldn’t cope with him. The new carers from an agency were much better, seldom rang me if they had a problem, and usually turned up more or less on time. Do you think it might be worth trying a different carer agency - one that is well versed in dementia?

If I’m totally honest I think it might be time to start considering a carehome for both of them. I’m sure if your mum understood how much you were doing for her she wouldn’t want you continue with the level of care you and your sister are providing. Or perhaps your mum would be happy going to daycare where she would get a freshly cooked meal.

I lived only 5 minutes away from my dad and I remember that feeling of anxiety when I had to visit. I don’t think you’ll be able to carry on like this for much longer. Please, at least consider a couple of weeks respite so you can decide what to do next.

Hi , Thank you for your response .We are actually on our 3rd agency now -the first two were worse . I’ve asked the current company for more visits, but they just don’t seem to be able to cope with the 4 times a day even -due to lack of staff .I know other families who are having the same problem in our area .
I think a carehome is the answer , but how do you get their consent? Mum has capacity to make decisions ( she thinks she can look after herself and Dad) and my Dad has, some of the time .Both have refused .My Dad said he would rather die than go into a home !
Initially I said that I would do my best to keep them at home as long as possible , but my best is no longer good enough .
Thank you

 

[Maggie129!]

Hello @Maggie129!

Dealing with both parents together is draining and I am not surprised that you and your sister are burned out.

I think that as your parents have such different needs it may be better to sort out their care independently and not as a couple now. Perhaps your dad might be better in a care home so that he will be looked after and then things could be put in place for your mum at home - possibly day care which will be a sociable occasion for her and keep her safe.

I would ask for a new needs assessment for both your parents and stress to SS that you can no longer meet their needs.

Thank you for your response .This is what is required , definitely.
I haven’t really looked into day care for mum -I will start investigating
Regarding my Dad -he doesn’t do well when he is separated from Mum , which is the main reason why we are desperately trying to find a way to keep them together , but as you say -they both have very different needs and I think we are at the point where we need to , but it will be heart-breaking ?

 

[Jaded'n'faded]

This is incredibly difficult. Not only do you have the double whammy of both parents with dementia, they are both still have a degree of capacity and don't want to go in a care home at any cost! I get that, I really do but... although they have enough capacity to say that, neither is able to understand their own care needs - it's a catch 22.

You are at the maximum with carers now really - 4 visits a day plus you and your sister. Is one of you with them overnight? That would be my concern - that there are periods of time when they are alone and that is worrying. Not helped of course that they are so different, being at different stages. It sounds as though your father is further along so perhaps you could tell him the doctor wants him to move to the 'cottage hospital' for a bit till he's stronger? (That would be a care home, initally for respite but with a view to permanent care.) No - probably too hard if he'd miss your mum too much. And she still likes to socialise.... can you get her into daycare, again on some pretext? I don't know what else to suggest! At some point your father's wishes may be overruled if he's declared not to have capacity (i.e. unable to understand his care needs.)

And I think you'll have to put your foot down over the cooking! It's unreasonable of your mum to demand everything is cooked from scratch so keep pushing the ready meals... I wish you and your sister much luck - difficult times ahead. It must feel like you're just waiting for a crisis but in some ways, that might 'force' the care home situation....

At some point, 'united we stand' may have to become 'divide and rule'.

 

[Maggie129!]

This is incredibly difficult. Not only do you have the double whammy of both parents with dementia, they are both still have a degree of capacity and don't want to go in a care home at any cost! I get that, I really do but... although they have enough capacity to say that, neither is able to understand their own care needs - it's a catch 22.

You are at the maximum with carers now really - 4 visits a day plus you and your sister. Is one of you with them overnight? That would be my concern - that there are periods of time when they are alone and that is worrying. Not helped of course that they are so different, being at different stages. It sounds as though your father is further along so perhaps you could tell him the doctor wants him to move to the 'cottage hospital' for a bit till he's stronger? (That would be a care home, initally for respite but with a view to permanent care.) No - probably too hard if he'd miss your mum too much. And she still likes to socialise.... can you get her into daycare, again on some pretext? I don't know what else to suggest! At some point your father's wishes may be overruled if he's declared not to have capacity (i.e. unable to understand his care needs.)

And I think you'll have to put your foot down over the cooking! It's unreasonable of your mum to demand everything is cooked from scratch so keep pushing the ready meals... I wish you and your sister much luck - difficult times ahead. It must feel like you're just waiting for a crisis but in some ways, that might 'force' the care home situation....

At some point, 'united we stand' may have to become 'divide and rule'.

Thank you . It’s helping so much talking to people who understand .I have support from friends , but no one can completely understand the emotional side of it all .

I’ve had a particularly bad week due to having to spend 24 hours in A/e with Dad ( UTI ) , and felt really overwhelmed yesterday when I wrote this post. Feeling more positive today , particularly as I got to my parents house and found Mum helping my Dad ( this never happens ) and Dad smiling at her ?

Regarding my mums meals -I probably made it sound like she demands freshly cooked , but she doesn’t .Whatever I put in front of her -she thanks me and says how lovely it is , but then plays with it ( if it’s a ready meal ) and then tries to hide it in the bin when I’m not looking ?. There is a lot of my Mum still there -she was the most unselfish , caring person who looked after all of our elderly neighbours when she was younger - she has short term memory loss and living in a life that was 2 years ago , which is why she forgets that Dad isn’t capable of looking after himself

They are on their own throughout the night - a carer puts Dad to bed late and he will sleep the whole night until we get him up in the morning .If there is a problem during the night - my Mum will phone us

Thank you

 

[Jaded'n'faded]

Fingers crossed they both sleep well then! But I honestly don't think the situation is sustainable for much longer - nor do you though your hands are tied when they won't willingly move into care. It's hard when you ideally want to keep them together (for good reasons) but their needs are so different they might do better apart soon...

I hope you and your sister are getting some time for yourselves and your families. And you are working too - I honestly don't know how you do it.

 

[Maggie129!]

Fingers crossed they both sleep well then! But I honestly don't think the situation is sustainable for much longer - nor do you though your hands are tied when they won't willingly move into care. It's hard when you ideally want to keep them together (for good reasons) but their needs are so different they might do better apart soon...

I hope you and your sister are getting some time for yourselves and your families. And you are working too - I honestly don't know how you do it.

Me neither , but reading some of the posts on here -I think we are quite ‘ lucky ‘ that Dad sleeps the majority of the time .The only time we experience agitation is if he has an infection , so far !!!
I’m Nhs , so work is pretty difficult aswell -I really don’t get a break at all from caring and I know I now have to before I get Ill and can’t look after anyone
Thank you for listening-I do feel a lot stronger today Than yesterday