Day Care/Respite Care concern

[Linbrusco]

We have a Needs Assesor coming next Monday to see Mum with moderate... tending towards severe Alz, myself ( main carer) and my sister. Dad won't be present as we feel Mum will not quite open up or be "truthful" for fear of Dad laughing and making jokes. Dad has MCI. He muddles along caring for Mum also, but even after 3 yrs really doesn't have a clue, let alone coping skills. He has had visits with our Memory Team for his own MCI, and our Alz Key worker to talk to him about Mum.
Mum also has to have an assesement by a Geriatric Community Nurse to ascertain what level of care is needed for Respite.

It was meant to be last week, but we had to cancel due to Mum still gtting over a UTI, for which she ended up in hospital for several hours.
Mum has now had two UTI's in just over 2 months. Mum has Chronic Lymphocytic Leukemia, and since developing incontinence at Christmas, I can see this becoming a real issue. She needs heavy duty antibiotics and constant monitoring of fluid intake, which I cannot provide 24/7 as I work, and Dad tries his best but gets into arguments with Mum. Mum says shes fed up him telling her what to do

Mum needs more care during the day, than her 3 Alzheimers groups she goes to, and I feel I need a break soon, as does Dad, but he doesn't readily admit it.
He tells my sister that he doesn't want Mum going into Care, but on the other hand tells me he could do with a break as Mum is getting worse and can't Mum go and stay at my sisters for a week or two, but then says Mum cannot stay at my sisters as she gets too confused.
In fact my sister is dead set against Daycare or Respite let alone eventual Care at all, as she says Mum is no where at that level. In short because Mum can still talk,walk and feed herself, then end of story.

I have tried alternate Dementia/Care programmes, but Mum says everyone is off their head or got something wrong with them. They frighten her.
On a good day she can be quite aware, and almost her old self.... very far and few between though.
I have EPOA for health & welfare and her GP has already deemed Mum as incapable of making a sound indepdant decision regarding her health and welfare. Nothing has been registered with the lawyer as yet.

I also have a husband with health needs, although independant, and two teenagers.
I am in such a state of anxiety over what to do, and how to keep everyone happy

 

[Holly73]

We have a Needs Assesor coming next Monday to see Mum with moderate... tending towards severe Alz, myself ( main carer) and my sister. Dad won't be present as we feel Mum will not quite open up or be "truthful" for fear of Dad laughing and making jokes. Dad has MCI. He muddles along caring for Mum also, but even after 3 yrs really doesn't have a clue, let alone coping skills. He has had visits with our Memory Team for his own MCI, and our Alz Key worker to talk to him about Mum.
Mum also has to have an assesement by a Geriatric Community Nurse to ascertain what level of care is needed for Respite.

It was meant to be last week, but we had to cancel due to Mum still gtting over a UTI, for which she ended up in hospital for several hours.
Mum has now had two UTI's in just over 2 months. Mum has Chronic Lymphocytic Leukemia, and since developing incontinence at Christmas, I can see this becoming a real issue. She needs heavy duty antibiotics and constant monitoring of fluid intake, which I cannot provide 24/7 as I work, and Dad tries his best but gets into arguments with Mum. Mum says shes fed up him telling her what to do

Mum needs more care during the day, than her 3 Alzheimers groups she goes to, and I feel I need a break soon, as does Dad, but he doesn't readily admit it.
He tells my sister that he doesn't want Mum going into Care, but on the other hand tells me he could do with a break as Mum is getting worse and can't Mum go and stay at my sisters for a week or two, but then says Mum cannot stay at my sisters as she gets too confused.
In fact my sister is dead set against Daycare or Respite let alone eventual Care at all, as she says Mum is no where at that level. In short because Mum can still talk,walk and feed herself, then end of story.

I have tried alternate Dementia/Care programmes, but Mum says everyone is off their head or got something wrong with them. They frighten her.
On a good day she can be quite aware, and almost her old self.... very far and few between though.
I have EPOA for health & welfare and her GP has already deemed Mum as incapable of making a sound indepdant decision regarding her health and welfare. Nothing has been registered with the lawyer as yet.

I also have a husband with health needs, although independant, and two teenagers.
I am in such a state of anxiety over what to do, and how to keep everyone happy

Hello Linbrusco,
I'm too new to all this to be the right person to offer advice but wanted to respond to show support and to keep your thread bumped up until more people get a chance to reply. I'm so sorry you have so much on your plate. It does seem to me that maybe a couple of weeks of mum staying with your sister would be beneficial to all. You and your dad would get a much needed break and it would give your sister the opportunity to properly appreciate you mum's care needs. Thinking of you.
Susan

 

[jaymor]

Hopefully the needs assessor will do the job properly and your sister will see that your Mother is in need of more care. Dementia is a disease, an unseen disease like cancer. We would never say a cancer suffer does not need care because they walk, talk and feed themselves.

Make sure that you are allowed some input and the assessor does not take your Mother's words as gospel.

Good luck.

 

[Grannie G]

It`s not possible for you to continue spinning so many plates Lin without some effect on your own health.

Stand firm when the assessor visits and tell it as it is. Too much is being asked of you.

 

[Otiruz]

Without doubt YOU need help. I did not come onto this forum until I was absolutely at my wits end and that is possibly true for many people.

"myself ( main carer) and my sister."

Unfortunately for you the battle with this disease is complicated by the family dynamics but if you make your needs clear as the main carer, YOUR views should be taken into consideration above those of your sister's. Unless she would like to volunteer to step into your shoes whilst you have a break? Would this also alleviate the pressure on your poor Father? If not could he stay with you whilst your sister temporarily moves in with your mother! Perhaps you could make this suggestion if your sisters argues against respite. Sorry to sound so brutal but is seems as if, like me, you have been put into a position where you feel your aim in life is to make everyone else happy. It isn't. You will have to be forthright about the effects the amount of care, worry and confrontation is having on you and in turn, your family. PWD have no or little understanding of their own limitations at the stage your lovely Mum is at, or if they do it comes and goes. Of course she will not want to go into respite care, but my own experience with my Mum proved to be the way forward to enable Mum to physically get back on her feet. For me to reestablish family life and to feel refreshed and invigorated enough to face the next stages. Good luck Linbrusco - there is so much help and support on TP.

 

[Kjn]

Feel for you Linbrusco, I agree you need your input taken on board too. Good luck x

 

[Risa]

Hi Linbrusco

We are in a similar position to you - waiting for an appointment with an assessor (hopefully in the next month) with a view to Mum going to daycare/respite/having carers in. Dad has been the one turning down any help but is definitely struggling now

However Mum has severe dementia (needs help with everything) and we are worried about how well she will cope with respite or daycare as she is used to being with Dad 24/7. Really wish that Dad had accepted help when Mum was at an earlier stage and maybe would have got used to others being involved in her care. Please learn from our mistake!