Dementia and Parkinsons

[Honey15]

Just feeling sad...to watch the person you love deteriorate in front of your eyes ...struggling with mobility and remembering ...it’s tough...but he’s one amazing man and I will always be here for him The consultants told me I need to join The Alzheimer’s Society and a care package needs to be put in place ,im not sure about any of this .

 

[Amy in the US]

Hello, @Honey15, and welcome to Talking Point. I'm sorry you have needed to find your way here, but hope you will get help and support and information. TP has been a lifesaver for me.

Yes, the deterioration is very difficult to watch, isn't it? I have a parent with dementia, not a partner, but we have many members here on TP who have, or are, caring for a spouse (and sometimes other family as well) with dementia. You're in good company.

Here is the thing: dementia, like Parkinson's, is a progressive disease. At some point, there is a downturn. It's a marathon, not a sprint. You have to conserve your strength, so you can keep going.

Another thing: dementia will take all the time and energy you throw at it, and be insatiable for more.

And a third thing: being a hands on caregiver, 24/7, is a really tough job, physically and emotionally. When you add dementia to the mix, it gets even harder. No one person can do it alone, 24/7, 365 days a year, forever, without suffering consequences. Dementia will break down your health if you allow it. Just the sleep deprivation alone (never mind practical things like lifting, personal care, the mountains of washing from incontinence, behavioural issues) can do you in, if you're not careful.

Never refuse help, and never be afraid to ask for help you need.

It's also smart to have an emergency plan, just in case, if you are the main carer. What if: you get the flu, or break your arm, or have to have an op, or need to leave town, or any number of things.

A good place to start is with getting PoA, if you haven't done already, and then with a needs assessment and a carers assessment. Others here on TP who know more about the UK system (if that is where you are) will be along to advise. Very best wishes to you.

 

[Shedrech]

hello @Honey15
a warm welcome to TP
it's good to know that your consultant directed you here - you will find the forum an amazing resource for useful, practical information and also a place of sanctuary and sympathy
for the care package, contact your man's Local Authority Adult Services and request an assessment of his cafe needs as he has a right to this - if they ask, don't give out any info on his finances, say you don't know and will have to check with him later as a vinan ial zssessment comes after that for care needs
a package can include home care visits, day care, respite and a visit from an OT to suggest aids and adaptions to the home
also look into applying for Attendance Allowance as it's a benefit based on need, it's not means tested
do have a good read round the forum
and post again with anything that's on your mind

 

[Honey15]

hello @Honey15
a warm welcome to TP
it's good to know that your consultant directed you here - you will find the forum an amazing resource for useful, practical information and also a place of sanctuary and sympathy
for the care package, contact your man's Local Authority Adult Services and request an assessment of his cafe needs as he has a right to this - if they ask, don't give out any info on his finances, say you don't know and will have to check with him later as a vinan ial zssessment comes after that for care needs
a package can include home care visits, day care, respite and a visit from an OT to suggest aids and adaptions to the home
also look into applying for Attendance Allowance as it's a benefit based on need, it's not means tested
do have a good read round the forum
and post again with anything that's on your mind

Thankyou .OT Has Been involved for the past year but the difficulty is moving in bed and we really haven’t overcome those issues yet.I have to lift him in and out of chairs,shave and shower him,generally look after him 24/7 but am lucky as he doesn’t leave the house without me ,so I can pop out to do jobs.I am waiting for slide sheets .He doesn’t qualify for attendance allowance as we live in the UK but he is Irish .The Dr has organised the care package assessment but I am sceptical about how we will feel about having someone else helping so will just have to see how that goes.I am sure it is much more overwhelming for him than it is for me..thanks for your input .

 

[Honey15]

hello @Honey15
a warm welcome to TP
it's good to know that your consultant directed you here - you will find the forum an amazing resource for useful, practical information and also a place of sanctuary and sympathy
for the care package, contact your man's Local Authority Adult Services and request an assessment of his cafe needs as he has a right to this - if they ask, don't give out any info on his finances, say you don't know and will have to check with him later as a vinan ial zssessment comes after that for care needs
a package can include home care visits, day care, respite and a visit from an OT to suggest aids and adaptions to the home
also look into applying for Attendance Allowance as it's a benefit based on need, it's not means tested
do have a good read round the forum
and post again with anything that's on your mind

Thankyou .OT Has Been involved for the past year but the difficulty is moving in bed and we really haven’t overcome those issues yet.I have to lift him in and out of chairs,shave and shower him,generally look after him 24/7 but am lucky as he doesn’t leave the house without me ,so I can pop out to do jobs.I am waiting for slide sheets .He doesn’t qualify for attendance allowance as we live in the UK but he is Irish .The Dr has organised the care package assessment but I am sceptical about how we will feel about having someone else helping so will just have to see how that goes.I am sure it is much more overwhelming for him than it is for me..thanks for your input .

Hello, @Honey15, and welcome to Talking Point. I'm sorry you have needed to find your way here, but hope you will get help and support and information. TP has been a lifesaver for me.

Yes, the deterioration is very difficult to watch, isn't it? I have a parent with dementia, not a partner, but we have many members here on TP who have, or are, caring for a spouse (and sometimes other family as well) with dementia. You're in good company.

Here is the thing: dementia, like Parkinson's, is a progressive disease. At some point, there is a downturn. It's a marathon, not a sprint. You have to conserve your strength, so you can keep going.

Another thing: dementia will take all the time and energy you throw at it, and be insatiable for more.

And a third thing: being a hands on caregiver, 24/7, is a really tough job, physically and emotionally. When you add dementia to the mix, it gets even harder. No one person can do it alone, 24/7, 365 days a year, forever, without suffering consequences. Dementia will break down your health if you allow it. Just the sleep deprivation alone (never mind practical things like lifting, personal care, the mountains of washing from incontinence, behavioural issues) can do you in, if you're not careful.

Never refuse help, and never be afraid to ask for help you need.

It's also smart to have an emergency plan, just in case, if you are the main carer. What if: you get the flu, or break your arm, or have to have an op, or need to leave town, or any number of things.

A good place to start is with getting PoA, if you haven't done already, and then with a needs assessment and a carers assessment. Others here on TP who know more about the UK system (if that is where you are) will be along to advise. Very best wishes to you.

Hello, @Honey15, and welcome to Talking Point. I'm sorry you have needed to find your way here, but hope you will get help and support and information. TP has been a lifesaver for me.

Yes, the deterioration is very difficult to watch, isn't it? I have a parent with dementia, not a partner, but we have many members here on TP who have, or are, caring for a spouse (and sometimes other family as well) with dementia. You're in good company.

Here is the thing: dementia, like Parkinson's, is a progressive disease. At some point, there is a downturn. It's a marathon, not a sprint. You have to conserve your strength, so you can keep going.

Another thing: dementia will take all the time and energy you throw at it, and be insatiable for more.

And a third thing: being a hands on caregiver, 24/7, is a really tough job, physically and emotionally. When you add dementia to the mix, it gets even harder. No one person can do it alone, 24/7, 365 days a year, forever, without suffering consequences. Dementia will break down your health if you allow it. Just the sleep deprivation alone (never mind practical things like lifting, personal care, the mountains of washing from incontinence, behavioural issues) can do you in, if you're not careful.

Never refuse help, and never be afraid to ask for help you need.

It's also smart to have an emergency plan, just in case, if you are the main carer. What if: you get the flu, or break your arm, or have to have an op, or need to leave town, or any number of things.

A good place to start is with getting PoA, if you haven't done already, and then with a needs assessment and a carers assessment. Others here on TP who know more about the UK system (if that is where you are) will be along to advise. Very best wishes to you.

Thankyou .OT Has Been involved for the past year but the difficulty is moving in bed and we really haven’t overcome those issues yet.I have to lift him in and out of chairs,shave and shower him,generally look after him 24/7 but am lucky as he doesn’t leave the house without me ,so I can pop out to do jobs.I am waiting for slide sheets .He doesn’t qualify for attendance allowance as we live in the UK but he is Irish .The Dr has organised the care package assessment but I am sceptical about how we will feel about having someone else helping so will just have to see how that goes.I am sure it is much more overwhelming for him than it is for me..thanks for your input .

 

[MAMMYGRANNY]

Hi Honey,
I'm sorry you are going through this as I am. My husband has Parkinsonism with fairly mild dementia.
Our main problems are same as yours but we got a hospital bed and sliding sheets a few weeks ago & they do help but it still takes two people as he's very rigid and heavy.
A carer now comes in the morning for 45 mins and 30 mins at bedtime. Like you I thought it might be intrusive but on the contrary we both look forward to her company. Like you I used to be able to pop out for a short while but he's such a falls risk now I can't leave him alone so every bit of human contact is very welcome!
We also got a type of transporter (I think they're called a Sara Stedy) which helps when I'm alone and he needs to be changed or move from his chair to the table or bathroom. I still have to lift him to reach it but we are awaiting a riser recliner chair which the OT says will help greatly.
I do hope you get help soon as you will not be able to do it alone as your husbands condition progresses. Yes it is so sad - it's heartbreaking to see the one you love unable to do anything for himself but fortunately my husband is not aware of his condition he thinks he'll get better and I don't tell him otherwise so he's fairly content and he loves the attention from the carers!

 

[Honey15]

Hi Honey,
I'm sorry you are going through this as I am. My husband has Parkinsonism with fairly mild dementia.
Our main problems are same as yours but we got a hospital bed and sliding sheets a few weeks ago & they do help but it still takes two people as he's very rigid and heavy.
A carer now comes in the morning for 45 mins and 30 mins at bedtime. Like you I thought it might be intrusive but on the contrary we both look forward to her company. Like you I used to be able to pop out for a short while but he's such a falls risk now I can't leave him alone so every bit of human contact is very welcome!
We also got a type of transporter (I think they're called a Sara Stedy) which helps when I'm alone and he needs to be changed or move from his chair to the table or bathroom. I still have to lift him to reach it but we are awaiting a riser recliner chair which the OT says will help greatly.
I do hope you get help soon as you will not be able to do it alone as your husbands condition progresses. Yes it is so sad - it's heartbreaking to see the one you love unable to do anything for himself but fortunately my husband is not aware of his condition he thinks he'll get better and I don't tell him otherwise so he's fairly content and he loves the attention from the carers!

Thanks for your input.We were staying with my son in Florida recently(back home now) and I purchased a recliner there as he had fallen out of bed a few times and thought it might be easier.The Consultant had told me he wouldnt be able to use controls as he wouldnt remember how .Even though there are only two big buttons..up or down the Doctor was correct.The other issue was even though it helped me I found him trying to clamber over the sides when it was in the extended lying position as he forgot he could push button to sit up.I am waiting for slide sheets as hoping that will ease things for me.
Altough the Parkinsons has been diagnosed for 5 years and Dementia the last 2 or so its heart breaking .He knows hes forgetting things but I make light of it.Its been a difficult week since we saw the Memory Doctor but I will soldier on and make sure hes happy.
Hope things are going well for you.