My old dad- advice please

TLJ

Registered User
Jun 11, 2008
24
Kent
Dear friends

Below is part of the letter I have sent to my MP, for all the good it will do. It repeats some of my original posting but keeps it all in context. If I get no help from the MP then I will take it further, not just for my own cause but also to help highlight the inadequacies of the system when it comes to helping Carers to care!



On 20th Feb 2008 I returned to Kent after over 2 years service in the remote bush of S Africa as a volunteer aid-worker working with AIDS affected orphans and vulnerable children with a British NGO.

I returned because of the declining health of my mother.

I gave up my career with the NHS (National Blood Service) and sold my posessions to raise the funds to get to S Africa.
On my return, although living in lodgings and seeking a permanent home for myself (I am a single person)
I was able to secure a wonderful full time job in The Chaucer Hospital in Canterbury.

My 83 year old mother died suddenly on 24th May leaving my father of 86 who has severe Alzheimers.He cannot be left alone.

To save him having to go into an EMI nursing home, I have very reluctantly given up my new job and moved into his one bedroomed Sheltered Accommodation flat in Lyminge while we are on the waiting list for a 2 bed roomed.

I am prepared to live frugally on Carer's Allowance with a top up from Income Support as I am used to living with a reduced income in S Africa.

However, this morning I have received a letter from the DWP to say that my claim for Carer's Allowance has been refused.

The reason stated is that I have not been in Great Britain for at least 26 out of the last 52 weeks.

I have phoned them and they have told me I can appeal but that this is the Governments ruling.

I have phoned Income Support who were also appalled at this decision. They told me they will still give me Income Support, but because I will not be claiming Carer's Allowance it will be£27.75 a week less than if I was claiming Carers Allowance.


With C.All. my income would have been £88.25 a week.
Now it will be only £60.50 a week.

In 13 weeks I can claim and receive Carers Allowance but that is a long time off and I have to live now.
I have no savings and no other income now I have left my job.
My father has only his pension and Attendance Allowance.

My willingness to take on full time care of my severely demented father means I am saving the Government an awful lot of money in paid Carers and a specialised, EMI Nursing Home, yet I am being penalised for being out of the country doing charity work for no income. It was not a holiday!Even if it was, what difference could it possibly make to my legitimate claim for this small financial assistance?

I could appeal this decision but I am sure it will come back as "Government policy", no one looks at individual circumstances.

Carer's Allowance is very meagre anyway as it is not seen as a job, even though it is a 24 hour, 7 days a week job but to be refused even this Allowance to care for my dad is just too awful.
 
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Lynne

Registered User
Jun 3, 2005
3,433
Suffolk,England
Good luck with your appeal

Very eloquently put. Might I suggest you copy it to Ivan Lewis, Ministry of Health? He's been on TV today spouting about how 'the government is looking closely at the whole issue of dementia' so let's see him put money where the mouth is.

Regards
 

Kandi

Registered User
Jul 3, 2007
9
Adelaide, Australia
Hi there.....I haven't been on this site since last November, but really felt for you when reading your stoties.....especially groundhog day. I had many of those while my mother lived with me. She has alzheimers. I eventually became so sleep deprived, emotionally and physically exhausted and the reality was mum was getting worse....there were also many unsafe incidents when I wasn't home. I work full time as I have two young kids to support as well. I placed mum in a care facility for my own sanity. What I have learnt is the love and care is always present, and visits are special, and often without the day to day caring issues and responsibilities. I am better, therefore my time with her is more valuable. With the placement came guilt....lots of it, and I still feel guilty, however the care she is receiving is great, and she is in the same facility as dad who also has dementia.
Go with your gut feeling.....I did. Had mum, and dad stay with me for as long as it was possible, and I wouldn't change a thing.

So go girl, and keep programimg time for you where possible.
Cheers.....Kandi -Australia
 

TLJ

Registered User
Jun 11, 2008
24
Kent
Thank you Kandi, for your words of support. Yeah I will give it my best shot. I will know when it is the right time.
Trouble is, people who don't live with dad all the time see the objective view of him and think he should be in a care home. But when you're with him all the time you can see the psychological reasons behind a lot of his behaviours which, with a bit of thought and patience, can be resolved for a time.
I don't know if the doctors actually take into consideration the psychology of the patient or just see the AZ.
I had to take dad to see his Psychiatrist a few days ago. I have seen this one before with dad when mum was alive (and I thought then what an arrogant little **** he was)and he didn't disappoint us this time. He was abrubt, hardly even looked at dad, certainly didn't once talk to him directly even out of courtesy.
It took ages for us to get to the clinic and dad got more and more agitated as we waited, then we were with the doctor for all of 5 minutes and he more or less said, keep taking the tablets.

The thing is, because I have known dad all my life I can still se traits of his normal self, the psychology behind the man who has AZ. A lot of his AZ induced problems are based on his normal reactions and way of doing things.
eg: he was ALWAYS an impatient man; he ALWAYS made a big fuss if he had to do a simple thing (like washing up the dishes)and made a martre of himself; he was always prone to exageration.
These natural idiosyncracies, now exploded out of all proportion by AZ, explains a lot.
But the doctors or other professionals just see these as symptoms of the disease.

They forget there was a person there to start with, with all the quirky ways we humans have.

So, at home I can see much of the real man, I can also see how the AZ has magnified all the annoying ways he had all his life.

We had a good day yesterday. He was in a calm receptive mood.
I talked to him about AZ. I told him he had an illness which he can't help having.
I explained it to him and he understood. He asked me to forgive him if he was ever rude to me. He asked sensible questions about the illness. He stayed calm for the rest of the day.
He has probably forgotten it all now but I am sure little bits stay in his mind somewhere.

Much of dealing with dad's dementia is how I deal with it myself. If I can be patient and calm then he is too. If I am tired and short with him then it affects him badly. I try not to make him feel inadequate if he does something silly like put his glasses in the fridge. I call him a silly old ****** and we laugh.
Not always easy to do though, especially answering the same question for the hundredth time and having to repeat the answer 4 times every time. I ain't no saint!

sorry for any spelling mistakes, haven't time to check. See ya!
 
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jane@hotmail

Registered User
Mar 13, 2008
49
Bedfordshire
Hi TLJ,

I've just got to say I'm so enjoying your posts. You're experiencing the horrible illness that is Alzhiemers, but you tell your very honest experiences in such a great way. You can make me want to cry, but in an instant, I'm laughing out loud.
My mum is in the late stages of Alzheimers and she is very sad now, so I miss the laughter that can be had at a certain stage of the illness.
Keep it up, you're great and I really hope you have many more happy/funny times with your dad, because although there will be many sad or frustrating times too, it'll be the happy/funny ones you'll always remember.

much love, jane x
 

TLJ

Registered User
Jun 11, 2008
24
Kent
Thank you for your kind words Jane. I am so sorry about your mum. There is something reassuring knowing we all understand eachother's problems. I must admit I do tend to see funny things where there shouldn't be but I think it's good therapy.

If you like a laugh you really must get that book 'The selfish pig's guide to caring' It is very funny but very honest and talks about things that we don't like to talk about.
He refers to the caree as the 'Piglet'- 'Person I Give Love and Endless Therapy' to.

Does anyone else out there with an elderly 'piglet' find themselves stuffing them with a huge meal and a glass of sherry in the evening in the subconscious hope that they will nod off early?

Dad's been ok today. Very sweet actually. I wonder if any of my talk with him yesterday has sunk in?

He still constantly mutters to himself and swears under his breath and, if I catch him doing it and wag a finger at him, he goes "tum te tum te tum" as if he was only singing and not actually using obsceneties.

I am lucky not to have to assist him with bodily functions, I dont know if I could do that to be honest.
As a Health Care Assistant in my normal life, I can put up with the occasional bit of poo on the toilet floor but I don't think I could go further with my own dad. I have helped people with much more intimate problems in my hospital work but it's different. Its like.... seeing your dad's willy....I just don't want to do that. Aren't I a terrible carer?


I do miss my mum!
 
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jane@hotmail

Registered User
Mar 13, 2008
49
Bedfordshire
TLJ,

See, you've done it again...........Laughing at the thought of your dad tum te tum te tuming, but finishing with a tear in my eye because my dad died in February, leaving me to care for mum. Boy, do I miss him too.


Jane x
 

TLJ

Registered User
Jun 11, 2008
24
Kent
Am I doing the right thing??

I know its still early days for me and dad but I do wonder if i am right to live with him rather than put him into an EMI home.
I wonder if he would cope better.
He seems to do a lot of "play acting"; pretending to be asleep when he's not; over acting - saying prayers and "please god help me" over and over when I am sitting right next to him having spent the day trying my best to help him.
At Age Concern he copes apparently reasonably ok...until I walk through the door, then its "oh thank god you came, take me away from here".
I presume its some kind of attention seeking but I am giving him as much attention as I can.
I also don't know if I am right to do this caring. I patiently repeat everything over and over, explain things as best as I can, do things which I think will make him happy, then he goes into the bedroom and swears about me and is SO angry and unpleasant, like a posessed man; then he comes in again and, in a different voice, sweet and nice, asks me if I am ok....then goes out and starts the swearing again.
It makes me wonder if the REAL him is so miserable and angry all the time just below the surface.
If so, then I am wasting my time here and he may as well go into residential care and I can go back to my own life.

One of his main symptoms is to catastrophise simple every day things, ie putting his shoe on, which he is more than capable of doing and he is saying "Oh god, help me" all the time. And he's not even religious!
And every night, when he asks me when i am coming to bed, I patiently explain that I am not "coming to bed" cos I sleep in the living room, he says "ok" then as he goes into his room is saying "please your $!£*ing self......" as if he is rejected, swearing and cursing.

I am a patient person but today I found myself raising my voice after the 5th time of answering him in a very loud voice for all the neighbours to hear,which pair of glasses are which, (he only has 2 pairs). When I get grumpy and raise my voice, he then gets angry (probably cos I have made him feel inadequate)and starts swearing, this all exacerbates the original problem. But I am not a saint. I try very hard to think of ways to deal with everything that won't seem confrontational or demean him in any way.
He asks for little jobs to do as he likes to feel useful, I give him simple tasks which he does while moaning and swearing and crashing about at having to do the job!

I chose to do this last month because I want him to be as happy as he can be without my mum.
I am wondering if this is an impossible task.
At the risk of sounding very selfish, I have given up my job and new life here to care for him. Am I just making him worse?
Should I try respite care to see how he reacts to it?

Social Services told me its best to try out respite when you feel strong and NOT when you're worn to a frazzle, then, while you worry about him you are at least able to deal with the worry.

What does anyone think?

Am I just being selfish? Its hard to tell isn't it? I want dad to be as ok as he can be but I don't want to lose my own chance of life if he is just the same in residential care as he is with me.
 

jane@hotmail

Registered User
Mar 13, 2008
49
Bedfordshire
Hi TLJ,

I think the least you can do for yourself at the moment is research the care homes available to your dad, then try and find time to go and look round a few. Either way, it will give you some idea of what is out there for respite care or full time care. At least that way, you have a second plan of action available to you.

If it's any help, your dads behavior is fairly normal with Alzhiemers. My mum hated getting out of bed because it meant she had to have a wash and get dressed, so she would close her eyes tight every time I came in and pretend she was asleep. Every time I washed her, she'd swear at me and tell me that I was trying to kill her, even though I was being as gentle as I could. She'd often tell me that she was going home to her real family because they loved her. This used to really upset me and also made me angry that I was trying so hard and she seemed so hateful towards me.

Mum recently spent 2 days with a chest infection, she hardly woke up and sat with her day and night feeding her water on a teaspoon, when she came out her sleep and I offered her tea she looked at me and said 'f--- off sh--house'.............! Somehow, it doesn't make me feel the way it used to, after a while you realize that it has no significance, although saying that, I believe that mum reacts like that more when she is scared or more confused than normal. So, therefore, it takes on a new meaning and not the one that it seems to be!

I think in time you adjust to the way you can cope with the repeat questions, the anger, etc. At times when your life is not as it should be or you are under extra stress, then it will always be more difficult.

Much love, Jane x
 

citybythesea

Registered User
Mar 23, 2008
632
53
coast of texas
oh TLJ

I don't think you're doing anything wrong and any decision you make will be the right decision.

I took care of mom and it was hard. Hard finding someone I could trust to come sit with her and just plain emotionally hard watching her deteriorate.

I chose totake care of her because I loved my mother with all my heart. Her death is sad, in that I lost my mother and she is not physically with me. But then I am happy for the woman who got to go be with my dad (he has been dead over 10 years). It's hard being a carer because you see the changes in them and that saddens you, but you have to be strong at the same time and make things work. I'll be honest with you, I don't think you will find a person who has taken care of an AD patient thru the worst of it that has not felt as you do. I did. I resent my brother for abandoning her when he was the one she really loved. (Not trying to seem heartless, she had a hard pregnancy with both of us but almost died with him..so they had a bond)

I got lucky I took care of my mom. I understand your plight at the thought of helping your dad with....I had to giggle at it. I never asked my sons, when they were around, to help change her, out of respect for that. Perhaps as he gets on you will not have to face this..with luck (in the meantime, do think of how you will handle it, so YOU are prepared).

I know giving up your job and life seems hard...but don't take it that far yet. While he is still healthy take him to respite and enjoy the time for you. Perhaps one of those days you will meet a kind,caring man who will understand. (I'm told they still exist!...and to be honest I raised both my boys to be that way and have not been disappointed-tho' when my 21 yr old was dating a 36 yr old with kids I did cringe a little..it didn't last tho') Sorry to get off subject.

If I remember you had siblings. Don't let them totally dump onyou without you knowing you will be the full carer. Make them sit once inawhile....good way to get out on date! Your father was there for all of you and not just you and should be treated that way!

To hit on one last subject. MOm had a Dr. who is in his 80's no and is so spunky. (I love him to pieces) HE explained to me that as AD makes its way that it has a tendency to make the person as they were when they were a child. An example of this is if a child is quiet he will become quiet..if the child had a temper, you will see a temper...if he was anxious, he will be anxious. Everything this man has told me about how mom would be was pretty much on. His wordings had come from obsrvations over the years. He has family members who are older than him and still alive and without AD and they have discussed it thru the ceiling as to how AD affects that person. The thing is when people get it most people do not know how that person was as a child so they have no form of measurement.

I'm sorry for rambling. Hang in there, you'll do the right thing.


HUGS

Nancy
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,074
Kent
Hello TLJ

Please don`t take offence at what I am about to say, but are you having second thoughts?

I get the impression you felt you would make your father happier by living with him. Well you might improve his quality of life but I doubt you will make him happy. From what I`ve heard and read of Alzheimers, and from my own experiences, happiness and Alzheimers do not mix.

Please think very carefully before you come to a final decision. There will be no blame on you should you feel you have taken too much on.

Love xx
 

zonkjonk

Registered User
Mar 1, 2007
290
Melbourne, Australia
hi tlj, just a brief response from me as I sped through your thread, (I am tired)
sorry if this has been covered previously...just wondering
does your dad know who you are?, ever?
when was the last time he spoke your name?
it is apparant he thinks you are your mum.(obviously)
this happened to our family around 8 months before placement in a nursing home
hugs,
Jo from OZ
 

TLJ

Registered User
Jun 11, 2008
24
Kent
Thank you Nancy & Jane, I really welcome the advice.
I find Talking Point helps just to off-load your thoughts, even if no one ever read them, it still helps to srite it down.

I think the problem is made worse by the fact that I never really got on well with my dad, mostly for the factors which are now compounded by the AD.
My 2 brothers have arranged to take him for an afternoon on alternate weeks so I get some time off every week.
At the moment I am not using the time wisely (though only had 3 of these so far, I tend to come back to dad's flat and sit like a zombie, just releshing the fact that I am on my own.
I have always liked my own company so being alone is a joy.
Only now have I really started missing my mum being around. Even when i was in Africa we spoke on the phone every week. I was very close to her.
I think now that most of the sorting out of practical things is over, I am now seeing the reality of this situation.
I felt sorry for dad at first with mum dying. now he never mentions her at all and is wrapped up in minor crisis like where are his shoes.
I must admit I do not take his verbal abuse personally, it is just so negative all the time and I am trying to be positive; still trying to adjust to being back in the UK and civization.

I know there are Carers out there going through so much worse and for so much longer than me; so i don;t want anyone to think I am just whinging on...its all theraputic.

I didn't take this on for any thanks or approval, i did it cos at the time it seemed right. My brother and I always spoke to mum about what would happen to dad if she died. She assumed he would have to go into care.
But her death was so unexpected and we had nothing set up; so I stepped into the breach and here I am.

Being refused Carer's Allowance really knocked me down, then to find they had lost my claim for Inc. Support and now have to start all over again.....I felt invisible and insignificant, with no money in the bank and not being able to access dad's account.

At least I am getting to see dad more intimately so that, should we decide to go for a care home, I would know we had tried.

I have lined up some care homes to go see re respite.

I also got myself a couple of little rodent friends.....I cannot bare to be without animals. Dad has not even noticed they are there but they give me a lot of pleasure to play with and watch. Very diverting!

Thanks and love to all.
TLJ