Older carers

[AliceA]

I feel all caring is difficult, every age has its issues, some have young children or work to juggle with. So I am not thinking it is worse for older carers but a bit different.

I have the time but not the energy, my own needs take longer to deal with too.
There seems very little help, once on a pension you are considered to be receiving a benefit. Two benefits are not allowed!

Attendance Allowance is a moot point, my GP reckons it is for people with physical needs,
I encourage my husband to be as self sufficient to as possible, I encourage him to make a sandwich etc.
He s fit because I keep him so his condition means he has no self motivation. I have to check he drinks, he can make a drink but forgets to drink it. He would not get something to eat if I was not there.
I do constantly monitor, check security, and I now have to do the chores once shared.

I do try to keep him keep face, I go to things to get him out and about, we have no car so not so easy.
My friend is register blind and cares for her husband in a similar way, even harder.
I suppose in common with most carers we are experiencing a grief for losing the person, the friend, partner and lover for someone different.
Perhaps our pain is in our thwarted expectations. I try not to expect but habit kicks in!
So older carers or younger carers advice gratefully received. Might even be taken! iF I have the energy.

 

[Beate]

To be honest, your GP does not have to sign off the Attendance Allowance, it has nothing to do with him. So ignore him and fill it in anyway, with the help of a charity if you need to. If he needs a lot of supervision and prompting, that counts too.

You're doing a great job, yes we get more tired when we're older but I don't think it means you're doing a worse job. I'm not 60 yet but there are older carers that have more energy than I do!

 

[marionq]

Alice your GP is a twerp. Ask your SW or whoever you deal with eg a CPN or someone from Age UK to help you apply for Attendance Allowance. The forms are best filled in by someone who knows what to say about your situation. The money helps pay for things to make your caring role easier.

Don't delay.

 

[Grannie G]

Hello Alice

If your husband would be at risk if left alone, he is entitled to Attendance Allowance. If he would be at risk if left alone overnight, he would be entitled to the higher rate Attendance Allowance.

 

[Beate]

Alice your GP is a twerp

That's what I wanted to write but thought I'd rein myself in for a change!

 

[fizzie]

Alice
I agree with all the others - twerp is very restrained - so now we know why so many people are missing out on Attendance Allowance!! Give Age UK a ring and ask for some help with the forms 0800 169 2081 - they have people trained to help with these tricky forms.

Take care and get that Attendance Allowance in place xxx

 

[AliceA]

Thank you all

Thanks for al your support, I must admit I was hoping for the GP to understand, but I suppose like us all we put on a brave face so she imagines I am more capable than I feel.
I have hesitated a bit because I do not want to demean my much loved husband.

Security can be a worry last night I asked him whether the back gate was locked, only to find it had not been. I carefully check the house doors now even though he assures me he has. I wait til he goes to the bathroom. Often they are not, I try to do them my self to save him, but too early and he may unlock them again. Sometimes he wants to be in charge!
Sometimes he seems unaware, sometimes just unconcerned.
The memory nurse warned me this is part of the illness. He does not always like my checking if too obvious. Although he is adjusting to it a bit more. At first he was in complete denial.

The brain scan showed vascular damage, tests show the possible decline rate, very borderline to dementia but some days are worse than others. He has lost his ability to do many practical things, he was so proud of making things now he cobbles them.

I suppose I am wary of labels, people do seem to have a tendency to become as labled in my experience. As you can tell we are on a steep learning curve.

Although the neuro consultant agreed that the decline had started many years back it really one came to a head a year or so ago.
I had been reminding him about business matters for years for a charity work he did.

Anyhow I feel better for your help in the background. Thank you all so much.

 

[Jeanyb]

Similar situation

Hi Alice, my mother and father in law are in their 80s and he has been diagnosed with vascular dementia. To be honest he is always smiling and generally seems happy. My mother in law has been affected the most. She is anxious most of the time and has started to check everything. My FIL leaves lights on, taps on etc but denies it is him. He just sits and watches TV all day, his mobility is worsening.
I have health issues that limit the time I can spend with them. I try to encourage my MIL to get out, the local community centre has a luncheon club etc, but she will not attend. I feel she thinks it is beneath her or just for "old people" not her. So she stays in the house and becomes more anxious and unwell. I will not abandon them but at the moment I feel I can't help someone who doesn't want to be helped.
We did get Attendance Allowance day rate because my FIL has to be prompted to take meds, wash, mobilise etc. Leave your GP out of it, contact Age Uk, you may be surprised how they can help.

 

[AliceA]

Now end of July 2018. The advice here was great in 2016, I am not sure why I did not log on again for a long time.
I think in the midst of navigating I went adrift in my busyness!
We are more than three years on from my husband's diagnose. My health had issues need on going
radio therapy, we celebrated our Diamond Wedding, welcomed another gt. Grandchild to our family.
We have slowly had to give up the many things I put into place to keep social stimulation.
My husband is getting slower, he sleeps a lot. I see a deterioration, we seem to muddle along happily keeping to the basics.
We have had library, surgery and public bus cut.
I really appreciate quiet days with no complications such as medical appointments.
I recognise I am feeling isolated, many friends are no longer here because of death, age and illheath, I accept that this a normal process.
I do find Joy in Small things.
My third Carers Assessment has been done at home by the Alzheimer's Society, this has been like a breath of fresh air. At last I feel someone really understands the specific problem rather than a general Caring one.
With your support in 2016 I applied for AA, someone from Age UK helped fill in the forms. I feel that as a spouse, so much we do just comes naturally that we do not see how much we actually do. So thank you for that.
I am now applying for a reduction in Council Tax. I baulked at the wording seriously mentally impaired.

My reasoning was people often conform to the labels they given, I did not want my husband to feel he was that disabled as my whole aim was to keep him as enabled as possible.

Thank you all.

 

[canary]

Yes, the wording for the council tax is horrible, but Im glad you decided to go with it anyway. I find I have to keep OH blissfully unaware of what is going on so that he can feel "in charge", even though he cant do it anymore. We all want them to remain as enabled as possible, but whatever you do there will be decline and its a difficult balancing act between stopping him doing things he is capable of, and getting him to do things that he isnt really able to do anymore and are causing him stress.

 

[Duggies-girl]

Now end of July 2018. The advice here was great in 2016, I am not sure why I did not log on again for a long time.
I think in the midst of navigating I went adrift in my busyness!
We are more than three years on from my husband's diagnose. My health had issues need on going
radio therapy, we celebrated our Diamond Wedding, welcomed another gt. Grandchild to our family.
We have slowly had to give up the many things I put into place to keep social stimulation.
My husband is getting slower, he sleeps a lot. I see a deterioration, we seem to muddle along happily keeping to the basics.
We have had library, surgery and public bus cut.
I really appreciate quiet days with no complications such as medical appointments.
I recognise I am feeling isolated, many friends are no longer here because of death, age and illheath, I accept that this a normal process.
I do find Joy in Small things.
My third Carers Assessment has been done at home by the Alzheimer's Society, this has been like a breath of fresh air. At last I feel someone really understands the specific problem rather than a general Caring one.
With your support in 2016 I applied for AA, someone from Age UK helped fill in the forms. I feel that as a spouse, so much we do just comes naturally that we do not see how much we actually do. So thank you for that.
I am now applying for a reduction in Council Tax. I baulked at the wording seriously mentally impaired.

My reasoning was people often conform to the labels they given, I did not want my husband to feel he was that disabled as my whole aim was to keep him as enabled as possible.

Thank you all.

Hi, yes I have just applied for council tax reduction for my dad. I felt awful when I enquired at his doctors about the form for severely mentally impaired but that is what dad is now. I just don't like saying it out loud.

 

[Reman]

Hi we got a lady in from Age Concern, we didn't think we would get Attendance allowance. She help us fill in the form and to our amazement we got the full allowance, so go for it. When you have your attendance allowance, then to can apply for Council Tax relief, unfortunately you will have to get your doctor's signature.

Completely understanding your feelings some days you can cope, other you grieve for your lost life. Keep smiling on the good days, and I hope you have a good friend you can moan to on the bad days.

 

[AliceA]

Hi, yes I have just applied for council tax reduction for my dad. I felt awful when I enquired at his doctors about the form for severely mentally impaired but that is what dad is now. I just don't like saying it out loud.

It is very difficult. When I talked with my husband about the word dementia we agreed we had to use it but neither of us liked it. It harked back to the gothic novel when demented meant utterly madly out of it. I can hear some of you saying well it is,
So we talk of his vascular condition.
Words mean different things to different people. Some are really are hard to use.

 

[AliceA]

Yes, the wording for the council tax is horrible, but Im glad you decided to go with it anyway. I find I have to keep OH blissfully unaware of what is going on so that he can feel "in charge", even though he cant do it anymore. We all want them to remain as enabled as possible, but whatever you do there will be decline and its a difficult balancing act between stopping him doing things he is capable of, and getting him to do things that he isnt really able to do anymore and are causing him stress.

Thank you, you are so very right. It depends on the day, the weather, and heavens knows what. Some days there is a flare of interest and reminding me what I should do then it fades. I just tell him enough to keep him reassured. I am organising a small extension, he drifts in and out of interest. It just keeps me on my toes to get it right!

 

[Duggies-girl]

It is very difficult. When I talked with my husband about the word dementia we agreed we had to use it but neither of us liked it. It harked back to the gothic novel when demented meant utterly madly out of it. I can hear some of you saying well it is,
So we talk of his vascular condition.
Words mean different things to different people. Some are really are hard to use.

Little memory problem is what dad has. We never ever say the D word or the A word for that matter.

 

[AliceA]

Little memory problem is what dad has. We never ever say the D word or the A word for that matter.

That is sensible, we only have to face this with some organisations when we need help. We came up with this when I felt I needed to act on a council Tax reduction. The form had put me off, however with the cuts including transport I have now taken that step. It was not easy, I could have done this three years ago.