What can I expect next?

Discussion in 'ARCHIVE FORUM: Support discussions' started by alaneg, May 3, 2005.

  1. alaneg

    alaneg Registered User

    May 2, 2005
    13
    Wirral UK
    Hello, first let me introduce myself, I'm Alan and have just joined this board. I am currently careing for my dad who was diagnosed with Alzheimers about 7 years ago. About two years ago he had got to the stage where he was finding it difficult to live alone ( my mum died in 1991) but we didn't consider him bad enough to move into a home so I invited him to come and live with me. I am also a widower, my wife having died in 2000.

    I have notice a marked deterioration in his condition in the last few months. Previously he enjoyed reading, listening to music watching the TV and even going for a daily walk. His main problem was speeking, he found great difficulty in finding the words and he would get very fraustated at not being able to express himself. Recently however he has lost interest in just about everything and tends to sleep most of the day, his speech has deteriorated even more and he can not even rember for example what order to put his clothes on.

    What I would like to know, if anyone can help, is how is the disease likely to progress from here. I will find it easier to cope if I know what to expect in the future. For example he is not at the moment incontinent is it inevitable that he will become so for I am not sure that that is something I could cope with by myself.

    He is currently prescribed Arecept which he has been on for about 7 years and Ebixa which he has been on for about two years.

    Many thanks
    Alan
     
  2. angela.robinson

    angela.robinson Registered User

    Dec 27, 2004
    520
    HI ALAN .it seems most AD sufferes proggress at different rates ,and in different ways ,i personally think 7 years is a turning point ,it certainly was for my husband ,i think your dad ,has gone so long in a manageble condition due to the medication he is on ,you done very well getting him on EBIXA i found it almost impossible to get ,unfortunatly ,it did not work for us ,and after being taken of aricept ,things went downhill rapid ,and that seems to be a familiar story ,if you are not getting any help with his care ,it seems it is now time to take as much help as possible .before things hit crisis point ,as it did in our case .ANGELA
     
  3. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Hi Alan, yes, you need to soon start getting a care plan in place. Sadly your Dad is likely to become more confused as time moves on now. He may not be able to distinguish night from day and wander at night, which will be hard on you, all the more reason for some help soon. He may also find it difficult to do many of the things that till now have given him pleasure, like reading the paper, following a programe on TV or doing a crossword or jig saw. These are some of the things my Mum found hard. But every one is different, making sure he is safe from possible harm will become uppermost to you. If you are caring alone, you will need to ensure that someone can keep an eye when you have to go out without him, all that sort of thing. If you have a SW get in touch with them and ask what is available in your area. There may be day care centres or such. Best wishes, love She. XX
     
  4. Sandy

    Sandy Registered User

    Mar 23, 2005
    6,847
    Hi Alan,

    Welcome to Talking Point.

    The Alzheimer's Society web site has some good fact sheets on the progression of dementia which you can find here:

    http://www.alzheimers.org.uk/Facts_about_dementia/How_dementia_progresses/index.htm

    You might also want to give the Society's helpline a ring on 0845 300 0336, they can answer queries and put you in touch with your local branch.

    I agree with Shelia, if you haven't yet been in touch with Social Services, it would be good to do so now. They can help you draw up a care plan for your dad (and also for you - as a carer you're entitled to have your needs assessed). They should also be able to advise you about benefits that you could be entitled to.

    Take Care,

    Sandy
     
  5. alaneg

    alaneg Registered User

    May 2, 2005
    13
    Wirral UK
    Thanks for the replies. The fact sheet was most helpful I suppose I should have searched that out myself!

    Re Dad's medication the Ebixa we have to get privately. When he was first put on it we did not notice any difference but kept it up in the hope that it might be doing some good. A few months ago Dad went through an awkward stage and for a week absolutely refused to take the Ebixa although he continued with his other medicines, and it was then that we notice a marked decline in his condition so it must have had a holding effect. Luckily he is now back on it. As far as the Arecept is concerned I was very worried that as Dad's condition declined the medication would be withdrawn prompting a futher decline. The NICE guidelines apparently advise that if the mini mental state tests fall below a certain level ( 13 I think )Arecept would normally be withdrawn. This advice can however can be ignored in exceptional circumstances and although Dad's score fell to 6 on his last visit to the memory clinic in April I was able to get a repeat prescription as Dad was still living at home.

    I have now taken your advice and contacted Social Services only to be told that there is a long waiting list of 2 to 3 months to get the initial assesment.

    Alan
     
  6. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Hi Alan, yes there is always a wait for these services, thats why you need to get your name on the list asap. Do hope things sort out a bit for you before too long. Love She. XX
     
  7. karen_white

    karen_white Registered User

    Apr 21, 2004
    72
    Berkshire
    Agree with the points made here about getting a care package into place. It tooks many phone calls and visits to make sure Dad got what was needed when things started to get worse at home.
    It's strange, it's been 2.5 years since Dad was at home and until you get reminded of how he was it's hard to remember! when you explain about you Dad not remembering the routine of putting on clothes, Dad was exacty the same. He started getting very frustrated when he was not able to do his buttons up, but wouldn't have any help so it would take and age to get him dressed as he was always a shirt a tie man (very quickly we replaced all his ties with ones that clip on to the top of the shirt).
    Dad's forgetfulness with words and speech was upsetting for both sides also, but it helped Dad by saying that I'd forgotten what I was saying and apologising to Dad for me being silly and it would help him not feel so inadequate.
    We learned very quickly only to have short conversations with Dad and not to use long sentences so he could understand and reply with short answers. Even that as the disease progressed was difficult.
    For us the worse problem we had with Dad was his incontience. Which was minor to begin with. It just made it impossible to go out near the end of him being at home. He would refuse to wear pads until he went into hos and finally his home. Mum was in the end changing him 3 to 4 times a day.
    I hope this isn't the way for your father and hope that the forum will be able to help as time goes on.
    best wishes.
    Karen.x
     
  8. Sandy

    Sandy Registered User

    Mar 23, 2005
    6,847
    Hi Alan,

    Glad you found the factsheet useful. They are a great resource, but it isn't always obvious where they are or easy to know that there is one that addresses your concerns. There is a very discrete link to them in the top left hand corner of this web site.

    I'm sorry that you are facing a wait of 2-3 month for the Social Services assessment. There is a very good fact sheet that outlines what you can expect to get from that process: http://www.alzheimers.org.uk/After_diagnosis/Getting_support/info_communityassessment.htm

    While it's frustrating to have this delay, you can use the time to get as much information as possible so that you are well-prepared for the assessment. You can possibly put some things in motion before the assessment. Also, some social workers are very well-informed and thorough and some are less so - the more you know, the less vulnerable you will be to that second group.

    Here are some things to consider now:

    * Welfare benefits - there is a good fact sheet on this. Your dad may well be entitled to Attendance Allowance (this is not means-tested) and yourself to Carers Allowance (this depends on your age). Benefits are paid from the date the forms are requested, so it makes sense to claim asap.

    * Legal stuff - like enduring power of attorney - there is also a good fact sheet on this.

    * Support stuff - either through day centres in your area or care assistants coming to your home. The Alzheimer's Society helpline might be able to help you with some information on day centres or other services in your area. There is also an organisation called Cross Roads that provides in-home care to give carers a break. There web site is http://www.crossroads.org.uk/index.html

    * Financial stuff - when Social Services completes their assessment, they will need to look into your dad's finances to determine what proportion of his care, if any, he will have to pay for directly. It might be worth just getting all the figures together beforehand and possibly discussing matters with a solicitor.

    * Occupational Therapy stuff - my father-in-law's Social Worker(SW) arranged for an Occupational Therapist to visit and suggest equiment that could be loaned (bath seat, matress lifting frame) and modifications which could be made to their house (grab rails). Your GP might be able to put this in motion now if you think it would be useful.

    * Care Home stuff - Visiting potential homes can be a time-consuming process and the one that you think is the best could have a long waiting list. Even if your father does not need a care home any time in the near future, it is worthwhile starting to look around now. The best resource is the Comission for Social Care Inspection web site which allows you to search for care homes that accept people with dementia, within a specified radius of a given post code: http://www.csci.org.uk/registeredservicesdirectory/RSSearchCategories.asp?Action=SearchCats&Type=CRH

    Take care,

    Sandy
     
  9. alaneg

    alaneg Registered User

    May 2, 2005
    13
    Wirral UK
    Thanks for all your kind replies.

    When my father first realised that there was a problem he made a great effort to get thngs sorted out himself. He is (was) a very clever bloke and realised at the very early stage that something was wrong and insisted that he be referred to a specialist. Because of this he is apparently one of longest patients to be on Arecept, over 7 years now. He also at that time organised power of atterney.

    He is now even worse, today I had great difficulty getting him out of bed and had to go out leaving him there. Luckily my brother was able to come round for an hour to check that he was allright but he didn.t want to move and could barely say a word. I returned home at about 2.30 and just about managed to get him up to have a morsel to eat and change his clothes. He had, whilst I was out. managed to go to the toilet so he is still managing that at the moment.

    What I don't know what to do about is whether to call in the doctor, Dad dosen't like like his visits and at the moment seems quite happy just lying there. I am afraid that if I call in the doctor he might be taken into hospital for tests etc., maybe be put on a drip if he is not eating, what is the point, he would hate it.
    I have a CPN coming on Thursday so unless there is a dramatic turn for the worse tomorrow I think I will wait until then for advice.

    What I have heard and seen of nursing homes they are not the places I would choose to send someone if it can possibly be avoided. His mental condition is obviously not going to improve so provided he is comfortable and reasonably happy why make too much effort on his physical condition! These are my thoughts at the moment....... I just don't know what to do for the best.

    Thanks for reading this ramble it was good to get it off my chest. Anyway it's 11.00pm so time for bed............or shall I have another glass of red!

    Goodnight Alan.
     
  10. daughter

    daughter Registered User

    Mar 16, 2005
    824
    Hi Alan,

    I wonder if the CPN may mention depression? Goodness knows why I was surprised when I heard that my Dad had been prescribed something for this when he wouldn't eat. It's small wonder that AD patients (and carers come to that) become depressed. Could be part of the reason for your Dad's apathy? The link below maybe of use.

    http://www.alzheimers.org.uk/talkingpoint/discuss/showthread.php?t=1586&highlight=depression

    Keep rambling Alan (!), hope you get some good suggestions tomorrow and best wishes,
     
  11. alaneg

    alaneg Registered User

    May 2, 2005
    13
    Wirral UK
    Rambling

    Hello everybody,

    I'm sorry about this post I can't imagine it can be of much interst but it helps me get it off my chest.

    Dad has been a wee bit better the last couple of days. As could be expected when the CPN arrived I sat with her for some time explaining how bad my father had become, how he could hardly talk anymore , was sleeping all the time and I thought he was going down hill fast. Of course when she went into see him he talked a bit and said he was alright! It reminded me of when I used to take the kids to the doctors and they would suddenly become well as they entered the surgery.

    Anyway the CPN advised that a GP should be called to see Dad as his declining condition could be down to something other than his AD. She rang the GP and the GP arrived within an hour! This tells me that if you want a GP visit get another health worker to make the appointment for you. I'm sure if I had rung I wouldn't have got such a speedy response. The GP duely arrived, suggested that Dad was dehidrated and after I made clear that I was unwilling for dad to be addmitted to hospital unless absolutly necessary, she organised two nurses to come and do blood tests at home. Today the results suggest that he is not as bad as first thought and his dehydration etc can be sorted out by special drinks which I will be collecting tomorrow.

    Aside from this I sometimes wonder if GPs know what they are doing. My Dad has rarely been physically ill and has rarely visited the GP so as a patient of a group practice he doesn't always see the same doctor. There are now several occasions when a second doctor has suggested that the medication prescribed by the first doctor is is either incorrect or useless. what are we surposed to do! I had a GP out because my Dad was allways feeling dizzy in the morning. The doctor prescribed some pills which were apparently for car sickness, this only came to light when I ordered a repeat prescription and a second doctor queried why I wanted them.

    I must confess that this careing dosn't come naturally to me. I did care fo my wife who died of cancer in 2000 but when I invited my Dad to come to live with me I didn't expext it to take over quite so much. Although it can be very satisfying, when he mumbles "your so good" and sometimes when he gets into bed and I have to pull the clothes over him you feel that love that you once gave to your kids when they were young. I serpose its just thae same but Dad is bigger and you remember him when he was OK

    If anyone has got his far I do appologise for going on but sometimes it helps just putting things into words.

    By the way are there out there many sons careing for their parents, most of the post on this site seem to indicate that it is spouses or daughters. I'd love to hear from anyone in my position.

    Many thanks
    Alan.
     
  12. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Hi Alan, yes, I found getting a nurse or care worker to speak to the GP/specialist worked pdq too. There are other sons caring for parents here on TP, hopefully some will reply to you soon. It is so exasperating when not even the doctors are constant isn't it, makes you want to scream I know. You seem to have had quite a bit to cope with if you were caring for your late wife before all this now with your Dad, you are very brave to take it on, not every one would or could. I know what you mean about the role reversal bit, I felt very maternal towards my Mum as she became more dependant. She was also very good at being "normal" in front of others, especially professionals coming to assess her etc. like you describe. This is one of the toughest illnesses to cope with in my book, hang on in there, post on here any time you need support, we will all be here for you as we are for each and every one of us. We all have good days and bad days so never worry, just post how you feel, someone will have felt or be going through similar. That is what is so good about TP. Thinking of you, love She. XX
     
  13. alaneg

    alaneg Registered User

    May 2, 2005
    13
    Wirral UK
    Fed up today

    Thanks Sheila for the support.

    I'm feeling a bit fed up today, which is not like me but Dad's getting me down a bit although I must admit that he is not too much trouble. I got the high energy drinks for him today but can I get him to drink them........ I've tried logical explanations, pleading, shouting but none of it worked and once again he has had next to nothing to eat or drink today and spent practically all day in bed which I am sure is not doing him any good but I don't know what to do.

    Apart from that I should be happy, at least I can leave dad alone for several hours at a time. I went for a good walk with the dog first thing then after the first bust up with dad I needed to get out of the house so I went out on my bike for an hour and a half which at least must be doing me a bit of good, I could do with loosing a few pounds! Got Dad up very briefly and managed to get him to eat a yogurt , did a bit of gardening and then just as I was relaxing watching a bit of TV Pete my elder son rang up and asked if I would like a game of golf, so at 4.30 we went to play the nine hole course in Wallasey, I really enjoyed it. So why am I feeling fed up I've had a good day.

    Right finished moan.

    All the best
    Alan
     
  14. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Alan, you have every right to moan, what you are doing is very hard to cope with. All any of us can do is our best and that is what your doing. Keep the GP/specialist etc. informed of your Dads behaviour and refusal to drink and eat, coax him all you can, thats all you can do. Who won the golf? Love She. XX
     
  15. Sandy

    Sandy Registered User

    Mar 23, 2005
    6,847
    Hi Alan,

    Glad you've been making use of the good weather. My mother-in-law found it very difficult caring for my father-in-law over the winter when she couldn't really get out much in the garden.

    Regarding your father's CPN's concerns that his behaviour could be caused by something other than AD, we had something very similar occur. About the time of my father-in-law's diagnosis, his appetite lessened and he spent a lot more time in bed. My husband and I thought it could be depression, but the GP did a thorough exam and my father-in-law mentioned a pain in his arm. To make a long story short, it turned out he had myeloma (a form of bone cancer) which came as a shock to all of us. It also meant that he was anaemic and his oxygen level were low, which was making his AD worse.

    I hope that you father does not have anything else seriously wrong with him, but the interaction of AD with other medical problems can make it difficult to get a clear picture. Did the CPN rule out depression? It could be significant that your father's withdrawal has happened around the same time as his ability to enjoy his normal activities dropped significantly.

    Regarding care homes, I can only speak from my experience of doing some initial visits to 7 specialist EMI homes in Essex. I would say that 3 of the homes I saw were very good. They had created an atmosphere where the residents' were treated with respect and care. Saying that, I wish my father-in-law will never need to go to any care home. But, if his care needs become too complex (even with care assistants making home visits) or my mother-in-law becomes ill, we need to have a safe, secure place where his mental and physical needs can be met.

    Take care,

    Sandy
     
  16. LADY45

    LADY45 Registered User

    May 18, 2005
    2
    next step

    alaneg
    i have found social interaction seems to slow down the progression, and decreases depression. check with your local Bureau of community support and services, or the department oh health and hospitals, to see if there is an Alzheimers day center in your area. his lost of interest is due to him realizing something is wrong,
    Denise
     
  17. alaneg

    alaneg Registered User

    May 2, 2005
    13
    Wirral UK
    Hello everyone,

    Thanks for your replies. We have tried to get my father involved with various groups and day centres when he was much better than he is now, but to no avail. The fact is that Dad has always been a fairly solitary bloke enjoyed friends and family more than large groups. A few months ago I did arrange for him to be a day patient at what I thought was a very nice residential home specialising in patients with dementia. On his first trial visit he was full of praise for the staff and nurses but was addament that he didn't want to go again. I surpose you cannot change someones basic nature just because they are getting old and confused.

    I have now managed to get Dad to drink his high energy drinks, they are called Fortisip and he is supposed to have three a day. He now thinks they are great but cannot usually manage more than half a one at a time so the difficulty is getting him to wake up and get out of bed 6 times a day but yesterday I did for the first time manage to get him to have the full amount.

    The doctor has now suggested that he may be suffering from mild depression, this is causing him to want to stay in bed all the time and thus agravate the hip/back pain he is suffering from. To this end he has now been prescribed a mild antidepressant Fluoxetine, one 20mg tablet a day. Does anyone have any experience with this drug? The list of possible side effects seems endless including things like drowsiness, confusion, diarrhoea and constipation. If he gets more drowsy he'd be asleep 24 hours a day!

    Right thats me finished, it's a great site this, even when I am not posting I'm reading of other peoples problems etc. My troubles are minor compared to some of the posters here, it helps keep things in perspective.

    All the very best to you all, the dog is moaning at my feet so I'll take her for a walk before I try and sort Dad out.

    Alan.
     
  18. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Hi Alan
    my wife was never a "joiner" either,she was happy with just friends and family.
    I have not suggested day centres yet ,not ready for that,but I do have sitters for two 3 hour sessions a week,and she has accepted that.
    Might be a start for Dad?
    Just a thought
    Norman
     
  19. alaneg

    alaneg Registered User

    May 2, 2005
    13
    Wirral UK
    Hello Norman,

    This disease obviously affects people in different ways. My dad is luckily not a wanderer in fact these days he hardly moves at all. He will get up to go to the loo, take his pills and have his drinks but that is about all. If I get him up and persuade him to watch a bit of tv he will go back to bed again after about 20 minutes.

    Because of this I am able to leave dad by himself for some time, after all I still have to go out to work, luckily I am self employed and never have to leave him for more than 3 to 4 hours. My brother also lives locally and is able to get in most days.

    This situation I know is not ideal but I am sure it is the best for dad's peace of mind. The slight risk of leaving him unattended is I think outweighed by the fact that he is still able to live at home and for the most part seems reasonably happy.

    Best wishes
    Alan
     
  20. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Hi Alan, my Mum had mixed reactions to day care. But, and it's a big one, I knew that if I had a series of bad nights, sundowning, etc, etc. My capacity to be a good carer would be compromised without a break for sleep etc. Therefore, in spite of the protestations, I continued with the day care. I explained it was to help both Mum and me cope with the problems Alz. caused, that they would help Mum "learn" how to deal with the memory loss etc. After a few weeks, she was quite happy to get on the mini bus taking her to "school" where she was now a much needed "monitor" "helping" the teacher with those with much worse problems than her own. Keep on truckin', love She. XX
     

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