1. frazer

    frazer Registered User

    Sep 9, 2004
    42
    london
    I need some help from your experience. i wish I had found this site before. My mum died in Jan, leaving my dad who has AD. They were very private, self contained people. dad is 86 with heart problems and pretty frail, very gentle but no short term memory whatsoever, etc. We have struggled with social services etc for support, but its all about funding. dad is currently in nursing home recovering from collapse. EVERYONE we have had counsel or advice from has tried to discourage us from bringing dad into our home, saying we could not cope etc. But clearly, from the correspondence on this site, this is the norm. Putting aside practicalities (we would need to move / get larger place etc) and emotions (I love my dad), what is best? What are the issues? Why are people against this?
     
  2. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Hi Frazer, because it is a 24/7 commitment if you do that's why! It will all be down to you to provide that care. OK you can buy in help, but if that help is late, doesn't show up, holiday times etc. etc. it's your problem and you have to deal with it regardless. It is also extremely hard to keep other relationships going as before, your marriage, kids, job, all will be put on hold to an extent. If you are ill, you still have to care for your AD sufferer or find someone at short notice who will, even for a short time. Then there is all the extra work of washing, meals, prevention of falls and wandering off. Broken sleep, soiled carpets etc., and the constant repetitive nature of the illness.If you think you can do it, then do, I did, right to the end. It was very hard and not everyone's cup of tea. But it was the right thing to do in our family. But, and it's a big one, don't go into it before discussing it with the rest of your family as it will affect you all. Marriages have broken up because of the stress of caring for a disabled family member, AD is one of the hardest to cope with. Also try to work out the package of care you could get, remember that you will need more help and respites as the sufferer gets more dependant. If, after talking over all that, you still want to, I wish you all the luck in the world and I sincerely hope you succeed. Love She. XX
     
  3. frazer

    frazer Registered User

    Sep 9, 2004
    42
    london
    thanks sheila, really appreciate your honest comments. i'm just soaking up the info and views - this site seems to be the only place to get REAL input. Noone in the health service has been prepared to give us anything other than very guarded "I cannot possibly advise you" stuff. it seems everyone is covering their backs/budgets/jobs. But where do you go to? this is such a secret affliction.
     
  4. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    It's the same old story Frazer, we don't all fit neatly into the boxes they want us to! Also, if you care for someone at home, a social worker or similar has to "keep an eye" if you want to put it that way. Once the AD sufferer goes into a home, the box can be ticked and the file tidied away! (At least thats how it appears to me I should add, before I get into trouble) Love, She. XX
     
  5. thompsonsom

    thompsonsom Registered User

    Jul 4, 2004
    97
    halifax
    Hi

    No one can tell you what is the best course of action for you, all we can do is advise you of how it is, you do not say how bad your dads AD is, does he still know who you are etc........ We got the same advise as you don't do it, but we decided to take my mum in law in and she has lived with us for 7 months, it has been hard graft, i gave up my job to look after her and sometimes she drives us insane and on the point of marriage break up with the stress of it all but we take one day at a time and have all the wheels in motion in terms of funding should we decide it is getting too much for us, we have her name down at a care home but can turn down the place and stay on the waiting list if we decide we are still able to cope, we have no help from the family in terms of a respite break but she is going into respite for 10 days next week which is the first break we will have had. I wish i had known more and been more pushy with doctors etc.. in feb as mum was still with it then and if they had been quicker starting her on the tablets it may not have been as hard as it has been, they have now decided they will give her the alzheimers tablet soon but now she barely knows who i am which she did 7 months ago, you need to push for quick action if your dad is still in the early stages to get the treatment before its too late. It is hard and thankless but we knew it would be.
    Good luck with your decision and do take heed of what everyone in the forum says, there are good bits and nice moments but a lot depends on how strong a foundation you are in a family as to wether you can survive it.

    janice
     
  6. Jude

    Jude Registered User

    Dear Frazer,

    I too was discouraged from caring at home for my parents and urged by the powers that be to put them into a Nursing Home. The problem I faced was that BOTH my parents have AD and I couldn't find a suitable Home that would take both of them together. The fact that I also live o/seas made it very difficult. I didn't actually get a lot of help from social services over this issue. Their attitude seemed to be 'Well, so what if they have to split up. Your parents are both 86 after all.'

    I have ended up looking after the oldies in a rented rural bunglow, with the aid of two incredibly wonderful carers. It's been very hard work, but I'm sure I made the right decision for us all. Sheila has outlined all the negatives and stresses really clearly. You can't possibly know how big the toll will be on yourself until you are in the situation.

    There are a lot of positives too. I can monitor my parents daily, ensure that they are well fed and cared for correctly and also help them to enjoy their last days. For me, this has been very satisfying and it's great to see them so physically fit and healthy.

    Jude
     
  7. storm

    storm Registered User

    Aug 10, 2004
    269
    notts
    dear frazer, I have been caring for my mum in law who is 91 for the last 2years.I was dreading her moving in with us and the mammoth task that lay before us.Yes it is hard work and it is a full time commitment but i feel sure that she would have deteriated alot more if she had been in a home.She seems to thrive on our little rutines and to see her happy and content even if it is in her own little world of ad seems to make it all worth while.We are coping today and that is how we do it, a day at a time.There are a lot of tears but when we do laugh it makes everything seem worth it.Good luck whatever your desision.storm
     
  8. frazer

    frazer Registered User

    Sep 9, 2004
    42
    london
    thanks guys, you are magic! i am amazed at the strength that you have, don't let anyone tell you otherwise.
    We found out all about the "ticked box" syndrome, sheila. Quickly learnt that you need to keep pushing and pushing to get help from doctors and social workers (i'm sure they are not all like that?), and if you are not very confrontational it isnt easy.
    My dad has just been prescribed Ibixa (?) he was on a different (aricept? or is that a washing machine) one before, which was really effective. But then the consultant asked my mother (also AD) if it was working and she said "no", so they stopped it! It has taken 7 months to get this overturned, but dad has deteriorated so much in that time that i wonder if it is a good thing now. I know now that we should have pushed and not been "nice". I wish I had known that every day counted. I appreciate your comment Janice about stress in the family - that's hard. I'm not sure this was included in the "for better or worse"?
    How did you sort out your carers Jude? are they full or part time etc etc, do you pay for them? Sorry if this is a bit rude!
    I really think you guys are amazing
     
  9. carol

    carol Registered User

    Jun 24, 2004
    196
    Surrey/Hampshire
    Hello Frazer,

    My mother in law aged 81 is on aricept at the moment, but her mmse score is 12 - 14, the consultant says that when it gets to 12 he has to follow guidelines and stop the aricept. I was interested to know what your fathers score was before his aricept was stopped. Mother in law was diagnosed some 5.5yrs. ago, but it only the last few months that father in law has allowed us to get social services involved. He wouldn't apply for attendance allowance until recently, all he kept saying was he could manage, but it is evident that he can't. Mother in law has been to day centre one day a week for the past couple of weeks, but father in law is not happy with her going. They are paying for day centre at the moment, but the social services carer support worker said if we have an assessment on mum in law, social services will fund two days per week (I don't know how father in law will feel about that, as he isn't happy her going one day a week) she will have to keep paying until she has the assessment, and the appointment could take a few months!! Incidentally he is 84yrs. old.

    Did you have to push hard for Ebixa, as when the aricept is stopped we are going to ask for Ebixa. Has it made any difference.

    Best wishes,

    Carol
     
  10. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    |Dear Frazer, be as blunt as you like, you need answers! Don't qoute me, but the key is to how much your parents have, anymore than about 56 thousand (I think that's the figure) and all care has to be paid for. Lower than that it goes on a sliding scale till you reach about 20 thousand, then it's free. It's up to you whether you get social services to work out a package or do it privately. Although if you do it privately you might not have a social worker in your corner to help. If its private, you approach the agency of your choice, ask your local AD society for advice, and set up a package to suit your needs. If SS do it, they set up a package to do about the same. I am only speaking from self experience here, do hope it's the same in your area. But do try Crossroads as well for extra days and perhaps a night too. Hope that helps a bit? Love, She. XX
     
  11. Jude

    Jude Registered User

    Dear Frazer,

    Ask as many questions as you like....!!

    My father is on Aricept and has been so for the past 5 years. He started on 5mg and a couple of years' ago upgraded to 10mg. It seems to suit him, for now. These congnitive recall tests still puzzle me, since Dad has only ever had one carried out and that was yonks ago.

    My mother couldn't take Aricept - it made her physically ill. She took no AD tabs at all until six months' ago when the Consultant Pschiatrist decided to trial her on Ebixa. It's a pretty new drug apparently. Anyway, the improvement has been astounding! It either works brilliantly or doesn't have any effect whatsoever. It can be incredibly expensive unless you can get it on the NHS.

    Re carers - When we first moved into the bungalow, I engaged a private carer agency to come in and help with washing and dressing my mother in the mornings. It was like having the Gestapo arrive in force...!! They lasted precisely one week, because I didn't feel inclined to fork out £16+ per hour to have my mother dragged out of bed, strip washed naked and called 'sweetie' by some bossy woman in a uniform. It wasn't the money to which I objected, it was the attitude....

    Anyway - the lady that used to help Mum at the close care accommodation agreed to come and work here. After that, her husband joined the team. It's a private arrangement and we are incredibly lucky to have them both.

    Check out all the Private Care Agencies in your area. I'm sure you will find one that will suit you. You'll be looking at £16 p/hr probably, but you will need to lay down the law and state exactly what you expect them to do and not to do.

    Best wishes,
    Jude
     
  12. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear fellow travellers, Judes right, I pasted a list of exactly what I wanted and the reasons why in the bathroom, eg, - Lily has very fragile skin, all care must be taken to avoid skin tears or marking. I also made sure I had enough towels, flannels and disposable J cloths for bottom, for each visit, so I didn't have to wash every single day if I was tired, (14 of each plus pack of J cloths always to hand sufficed.) A supply of disposable gloves and nappy bags also were to hand. I explained about mum's reluctance to comply, what creams were used etc. This was on the bathroom wall, some read it , some didn't. I also put a copy in their care file. I didn't have to, but I felt that if I had to complain, this would be my back up so to speak. Our first agency was exactly as Jude describes, disaster area! I called a meeting with the social worker and the SS admin adviser, they changed the agency, it worked, 2nd agency was brilliant. I also remain to this day, firm friends with one girl from the first agency who was the only one who understood dementia.Stick to your guns, get what you know is needed!! Love, She. XX
     
  13. Jude

    Jude Registered User

    AD Drugs

    Dear Carol,

    Have a look at Fact Sheet No 407. It's a comprehensive report on all the AD drugs available, including Ebixa.

    Jude
     
  14. carol

    carol Registered User

    Jun 24, 2004
    196
    Surrey/Hampshire
    Thanks for the info. Jude, I had previously read it but have just looked at the factsheet again. I don't know whether Ebixa is funded in our area or not, it took ages to get the Aricept, and father in law had to pay privately for it to start off with. Maybe we will have to pay privately for Ebixa, thats a question for the consultant in Nov.

    I'm waiting for a picture of Ollie!!

    Best wishes,

    Carol
     
  15. Jude

    Jude Registered User

    Dear Carol,

    Give the Consultant a good old push. Our Consultant was very helpful indeed, but he did say that had only prescribed Ebixa to one other AD patient besides my mother and that he feared that he would be 'in the bad books' for doing so. Apparently it's quite expensive. Mind you, after all the taxes the oldies have paid during their lives [and never been sick until AD] then I guess they deserve all the help they can get.

    It amazes me that drugs are produced to help people and then reluctantly prescribed because the NHS is too stingy to part with them. What's the point of all the research, if they won't dispense the tablets later on....????

    Jude

    PS: Carers have been off for a few days with a virus. So no camera yet! Am working on another and closer source if poss!
     
  16. frazer

    frazer Registered User

    Sep 9, 2004
    42
    london
    Hi Carol, my dad's score was 90% when aricept was stopped. Unfortunatel it was at a consult that only he and my mother (also unwell) attended. I have found these consults very frustrating since then - very short, a bit patronising, and no possibility of follow up - so any promises made cannot be chased. My dad alwas scores highly - its his peculiarity, but we feel the real issue was money. The social worker told be (verbal) that it was too expensive to give to everyone. the consultant said he wanted to see progression over 6 months before prescribing - well, you don't need a medical degree to guess what the progression has been! Now they say its too late to prescribe Aricept! So you have to push and push and push. Find the dark side of your character for dealings with professionals. there needs to be a big change in the approach to AD, but thats another story.
     

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