Questions, answers, decisions and help, please!!!!!!

[Lady M]

OH mobility declining rapidly! Now wheelchairedapart from a few steps to bathroom, has to be wheelchaired to table to eat etc, ! OT to supply a rotaunder for transfers whilst he can use the recliner chair to get up! ( don’t know what I am supposed to do when It is just me here!
Also been told for safety he must remain in his profiling bed overnight and use bottle, that’s not working bed and OH soaking this morning, trying pants tonight’s!
Question, is this decline all due to the dementia! ( Mixed Alzheimer’s and Vascular) A decline in cognitive also very apparent, yesterday for first time couldn’t work out guide on his TV remote or change to amount of money!
Who do I go to for these answers?
DN here this morning ( insulin injection) and for the first time said probably time to start considering care home! Horrible when said out loud although have known for some time could be the outcome!
Question 2. Who decides when OH will need residential care? He would require funding and I know that SS will try to keep him home here as long as possible! Do we have to wait for the inevitable accident!
Question 3. I am beginning to feel I am nearing the end of my capability as I am disabled myself! When do I shout, I CANT DO THIS ANYMORE! Then I think I can carry on a bit longer.
I spend night after night dreading all of this, but at this moment ‘we’ don’t really exist anymore, OH is solely wrapped up in ‘him’
I feel sad, frustrated, lonely , burnt out, isolated and all the emotions that everyone on TP suffers!
DN calls for insulin injection, carers for personal care, but thinking this is not enough anymore.
Where do I go for answers?
Thanks for reading !

 

[Cat27]

When the DN says it’s time then it’s time to start looking. They are very experienced at judging these things.

 

[Grannie G]

Where do I go for answers?

You tell Social Services @Lady M and get advice from everyone who comes through your door to help and can see the situation.

You are not expected to be on your knees before considering residential care.

Many of us feel we can`t do any more then after a good hour suddenly think we can hold out a bit longer.

This situation is not going to get better and there comes a time when either the needs of the person with dementia are not being met or the carer suffers carer breakdown which leads to a crisis .

I was advised to have a contingency plan and a care home in place just in case. If I did not have this and a crisis arose my husband would have been placed wherever there was a bed.

 

[BethRebecca]

OH mobility declining rapidly! Now wheelchairedapart from a few steps to bathroom, has to be wheelchaired to table to eat etc, ! OT to supply a rotaunder for transfers whilst he can use the recliner chair to get up! ( don’t know what I am supposed to do when It is just me here!
Also been told for safety he must remain in his profiling bed overnight and use bottle, that’s not working bed and OH soaking this morning, trying pants tonight’s!
Question, is this decline all due to the dementia! ( Mixed Alzheimer’s and Vascular) A decline in cognitive also very apparent, yesterday for first time couldn’t work out guide on his TV remote or change to amount of money!
Who do I go to for these answers?
DN here this morning ( insulin injection) and for the first time said probably time to start considering care home! Horrible when said out loud although have known for some time could be the outcome!
Question 2. Who decides when OH will need residential care? He would require funding and I know that SS will try to keep him home here as long as possible! Do we have to wait for the inevitable accident!
Question 3. I am beginning to feel I am nearing the end of my capability as I am disabled myself! When do I shout, I CANT DO THIS ANYMORE! Then I think I can carry on a bit longer.
I spend night after night dreading all of this, but at this moment ‘we’ don’t really exist anymore, OH is solely wrapped up in ‘him’
I feel sad, frustrated, lonely , burnt out, isolated and all the emotions that everyone on TP suffers!
DN calls for insulin injection, carers for personal care, but thinking this is not enough anymore.
Where do I go for answers?
Thanks for reading !

 

[BethRebecca]

I am at that point myself. We have a dreadful social worker who does very little, gave me totally the wrong information. My husband had to go into hospital for a few days a week or so ago and the dear staff on the ward called our social worker and said l was overwhelmed.?He was furious and told me they were overwhelmed l told him so was l and what was he going to do about it. He came to see us and l had asked the Alzheimer’s local rep to come, she was brilliant and hopefully he will now help. Supposed to be having 2weeks respite soon. Can you not have a break even for a week or two.

 

[Lady M]

I am at that point myself. We have a dreadful social worker who does very little, gave me totally the wrong information. My husband had to go into hospital for a few days a week or so ago and the dear staff on the ward called our social worker and said l was overwhelmed.?He was furious and told me they were overwhelmed l told him so was l and what was he going to do about it. He came to see us and l had asked the Alzheimer’s local rep to come, she was brilliant and hopefully he will now help. Supposed to be having 2weeks respite soon. Can you not have a break even for a week or two.

Hi BethRebecca! Firstly thanks for the reply!
Overwhelmed is probably ‘the’understatement!
OH social worker has visited him (us) once! Just to ensure that he needed amount of ‘care’ hours’ and arrange for the financial assessment. She is newly qualified, new to this area and has limited spoken English! Promised and agreed referrals to physios and OTs didn’t happen eventually happened via GP. I have had one phone call e to ask ‘ are things going along’????? No they are not. OH is declining and I am feeling despondent .
I did start a thread on TP asking about a carers assessment, and I have decided that I will request this! Maybe, just maybe it may lead somewhere!
Whilst with the assistance of purchases of aids etc our sons have made to aid their Dad and therefore me , things are getting extremely tough! This is with carers for his personal care and dressing etc!
Still don’t really understand who/ how/ when a decision regarding enduring care is made!
I hope that your planned respite gives you the R and R you need and a peaceful time to plan for you and your husband .

 

[mickeyplum]

You tell Social Services @Lady M and get advice from everyone who comes through your door to help and can see the situation.

You are not expected to be on your knees before considering residential care.

Many of us feel we can`t do any more then after a good hour suddenly think we can hold out a bit longer.

This situation is not going to get better and there comes a time when either the needs of the person with dementia are not being met or the carer suffers carer breakdown which leads to a crisis .

I was advised to have a contingency plan and a care home in place just in case. If I did not have this and a crisis arose my husband would have been placed wherever there was a bed.

I too was told a year ago to check out a suitable nursing home. I didn't see the point as OH is not up to that stage yet and surely by the time comes the vacancy will surely have gone. Does anyone else feel it is a waste of time and energy to go around visiting homes until a care home is actually needed.

 

[canary]

I too was told a year ago to check out a suitable nursing home. I didn't see the point as OH is not up to that stage yet and surely by the time comes the vacancy will surely have gone. Does anyone else feel it is a waste of time and energy to go around visiting homes until a care home is actually needed.

You never know when a care home is suddenly going to be needed. A stroke, a bad infection or a fall resulting in broken bones can all suddenly progress dementia or if you were suddenly taken ill would they be able to cope without you?
Much better to know what the care homes are like.

Certainly vacancies come and go - thats why you need to put their name on a waiting list. Just because their name is on the waiting list doesnt mean that you are in any way committed and if their name gets to the top of the list before you are ready you can simply ask for their name to remain on the list. If there is a sudden emergency you are more likely to get into the home of your choice if they are on the waiting list.

 

[Lady M]

Well here I am again, the new profiling bed isn’t working!! He cannot use the controls and cannot turnhimself to get to the sitting position to get out! 45mi utes of discomfort for him , distress for me etc although wearing pull ups he insists on getting to the loo!! Then another 15mins or so to get sorted back into bed!!!!
He is now sound asleep and here am I ....ranting on again.......
Looking possible it may have to be a. Catheter??????? Which has been mentioned but Oh dear the decline in so much is daily!!!!!!
I will have a cuppa and hoping when daylight things may look better!

 

[mickeyplum]

You never know when a care home is suddenly going to be needed. A stroke, a bad infection or a fall resulting in broken bones can all suddenly progress dementia or if you were suddenly taken ill would they be able to cope without you?
Much better to know what the care homes are like.

Certainly vacancies come and go - thats why you need to put their name on a waiting list. Just because their name is on the waiting list doesnt mean that you are in any way committed and if their name gets to the top of the list before you are ready you can simply ask for their name to remain on the list. If there is a sudden emergency you are more likely to get into the home of your choice if they are on the waiting list.

Thanks Canary for very helpful advice on how the care home vacancy system works. I had no idea they kept waiting lists

 

[AliceA]

Thank you, I did not either.
Our home of choice is just over the border, all rooms are ground floor, it is by far the nearest. If we choose this one and self fund we are concerned what happens then the funds run out, I doubt if our county will fund willingly.
Price wise it is just under £1000 per week. There is nothing cheaper close to home, many are glossy hotel types. They do have a Dementia wing and an Admiral nurse. It has charitable status.
Although we should cross that bridge when needed, a few ideas would be welcome.
My friend has had to arrange for her husband in a hurry.

 

[northumbrian_k]

@canary's advice is spot on. Having somewhere potentially lined up, or at least being on the waiting list for places as they become available is a very sensible thing to do. Viewing a range of different homes is not a waste of time even if it may seem too early. Having knowledge about what is available and suitable will be invaluable when a decision has to be made, whether as part of a plan or in response to a crisis.

I have been looking at Care Homes and have found one I like and that I think my wife would take to. There is no waiting list which gives me a dilemma as I'm not ready for it yet. I want to go on caring for my wife and enjoying what little is left of our life together but only if I can get her the personal care that she needs on a daily basis. Feedback about how calm and relaxed she was during her recent respite stay (at a different place) suggests that she may be be more ready than I am. Things are getting harder, with more frequent toilet issues, complete lack of memory from one second to the next and inability for me to even be out of sight for even a short while without her doing something unsafe or potentially harmful - today it was feeding the dog a small amount of chocolate which, as he is a big lad, will hopefully lead to no ill effects.

All of which is why I'll be speaking to the Care Home manager on Monday to organise a trial short stay with a view (if successful) to taking the plunge and moving her there sometime in the summer.