Non Acceptance of condition

[Gerry]

My wife (60) was diagnosed with Alzheimers almost 2 years ago. Her father had suffered from the same disease but this was before we met so I have no personal experience of how she coped, only references to her visits to him in the local hospital.

She has always been reluctant to tell anyone of her illness, even members of her family were to be kept in the dark.
Of course I have had to inform not only her family but my family and most of our friends. She has no knowledge that this has occurred.

We tried to get her involved with the local young persons group of the alzheimers society and her initial reacion at the first meeting was encouraging. However the second meeting was not a success and she indicated that she does not want to meet the group again. Even visits from the local society members have been rejected by my wife.

I have approached her doctor to see if there was any way to get her to accept her condition and he arranged for someone from the local mental health team to visit. Although my wife did allow the visit and responded with her usual social grace and merriment, the response to questions about how she copes when I am not around and how she feels when she cannot remember met with a dismissive response. She immediatley stated, on the departure of the visitor, that she did not want to see him again.

She also responds badly when I take her to see her consultant as he has to assess her using the MMSE, and she hates participating in this test. The last time it was conducted, she was very angry that I had not helped her with the answers.

She does not paticipate in houshold activities unless she is directed and helped. She has no hobbies, her only main interest is in shopping (usually for clothes) and social visits to freinds and family which involves travelling around for several hours a day.

If I gently attempt to restrict these activities she get very uptight and of course I am always the one to blame.

Thoughts of any assessment when applying for any assistance from social services etc. fill me with dread at her reaction, and thus far I have not had the courage to pursue any request for help.

I have already halved my working hours and am currently off sick with depression, and I suspect that I will not return to work. This will be a financial burden.

I do not know if I am doing the right thing in acceding to most of her wishes, or how to handle the grief (which includes her suggestion of living separately). when it is neccessary to not accede.

It has been suggested to me that it is common for sufferers not to accept their condition, but there seems to be little advice on how to cope with the problems that this brings.

 

[Angela]

Hi Gerry
Im afraid I have little words of wisdom for you and your situation.
This really is a dreadful situation for you and Im glad that you have found this site to share your feelings with others that do understand.
My first thought after reading your posting, is that you really should contact social services, they will have to do an assessment, which they may be able to do without your wifes input, im not sure sorry. But either way they can do both the community care assessment and the carers assessment in one sitting, and this really will be all that you will have to endure for that angle until there is a change in circumstances. I also feel that this is a necessaity to assist you in this new role that is very demanding and one that you should instigate immmediatly.
How can you continue to care for your wife, in the most caring and thoughtful, sensitive way that you appear to be, if you are not well yourself? You cant.
With respect, I would also consider, asking your family and friends to have more input in this situation. "You always hurt theone you love. And your wife is using you as her security blanket. You need some support too. Maybe someone else could take her to the consultant, so that you dont have the grief from that visit, I dare sayyou will have it for not going mind!
Does the anger last long? Please remember this is an illness, the words and their meanings may seem real, but they may be out of context and exaggerated. Heranger is reallyat the situation and the frustrationof the situation,and notreally aimed at you personally.
I wish you the best of luck and urge you to keep in touch

 

[Gerry]

Thanks Angela,
In answer to your question about how long does anger last, it usually is forgotten after sleep, sometimes it is abated if we visit friends or family and she assumes her social role.

I understand that her anger is probably due to her frustration and possibly a sort of background knowledge that she has a problem, but it can still engender in me a defensive response which exacerbates the situation.
Mostly the prime problem is that I recognise when she is upset but have no idea of the cause.
The usual cause is from something that I have said to friends or family which which she feels is "putting her down". This could be a correction (which I try to avoid unless it causes confusion) or taking over when she gets into difficulties with a talking point rather than just attempting to prompt her.
Being "on your guard" all the time is very exhausting and of course I quite often have a relapse into normal personal interaction with the third person.

My wife has a weekly shopping excursion with a friend and these few hours seem to be the only time to contact others for a chat, arrange doctors visit for myself to discuss my depression, contact any sources of assistance etc.

I am about to ask for a carers assessment but I unless thay can provide assistance with this non-acceptance then other services will not be useful.

 

[Angela]

Hi
Please do contact social services for the assessment. The outcome of this may not seem useful straight away, but it will make it clear how you can be best supported within your caring role. I would advise you to explain to your wife that this assessment is for you rather than her. Whilst your wife is talking to your family and friends, it may not be necessary for you to help her find the right word. If those that she is talking too are aware of her problem, then they might encourage her rather than you, and then she will have less course to blame you. As you say, having to be so careful of yourself is very exhausting.

I wonder if you are trying too hard Jerry? It seems that she has so much insight into her illness, I'm wondering if your wife is also aware of your extra effort, and maybe this is also upsetting her, she may be aware that you are changing too?

Your wifes weekly shopping trips seem to be a small saving grace for you and I would urge you to ask other family and friends to do something silmilar to help you both.
Take care

 

[PeterG]

Hi Gerry, some of what you mention strikes a chord with me. My wife is 56 & diagnosed almost 2 years ago, but I'm sure she had problems at least 1 year prior. Jen is on 10mg Aricept & this seems to be helping. Is your wife on any medication? Prescribing seems to depend on where you live, as usual.

Jen in her bad times accuses me of "controlling" her, and she wants to be left to live her own life. Most of the time, however, she's happy at me being home (got a redundancy deal from work).

Aricept seems to have slowing down effects of the disease, and Jen's test scores have remained the same 14 of 30 since 1 year. But as the minimum to get Aricept is 12 I'm not looking forward to the next test in 6 months, just keep fingers crossed.

We had a similiar response to the weekly health service visits, Jen refuses to attend the midweek group ("smells of urine!") & seems to me to want to deny being a patient, but we do keep up a Friday outing, always annoyed before the lady turns up but always sociable with the lady.

Now I'm waiting for the disability allowance to be assessed, if we can get middle range I can get some money for being a carer & some extra for caring for a spouse.

Best of luck & best wishes,

 

[Angela]

Hi Gerry
Havent heard from you recently.
How are you and your wife?

 

[Gerry]

Hi Peter,
Thanks for your response.
My wife is indeed on the drug Exelon(Rivastigmine) 6mg a day.
I have been advised, in writing, by a local mental health care worker that I could claim for the middle rate of the DLA for my wife, but I am not sure if this would necessitate an assessment and also her signature. Just asking for the forms to be sent to our address could result in her reading this mail and setting in motion another traumatic event.
If you don't mind me asking - how have you dealt with these problems, or am I just being paranoid?

Good luck with your appication
Gerry

Hi Angela
Thanks for your support, I can only get time to contact others for a few hours on Thursday morning.
Yesterday:
My wife was ready to go out to visit her mother but I had not had completed my sandwich for lunch, so she just left to walk 5 miles along a busy A class road where ther are no pavements. Within 5 minutes I had to go after her in the car and offer her a lift to her mothers.
Later on that day we had returned home and again she wanted to go out just before I was about to prepare dinner (early dinner @17:00) she packed up several plastic bags with various things she had been looking at and again departed. This time I managed to call her back and then transport her to her mothers house.
Later , as she was going to bed (20:30) she said " I don't expect I will see you in the morning". When I asked why she went on to explian that I was obvoiusly not happy with life and had changed a great deal in the last year etc. etc.
I probably am not good at hiding my distress and general depression at the situation. I did assure her that I would not leave her, but I'm not certain if that registered.
We continue on similar veins most days.

Best regards
Gerry

 

[Angela]

Gerry i am sorry to hear the awful situations you are finding yourself having to cope with. I can only repeat what i said in the previous posting. Ask others to help to take a little of the pressure off you a little more.
Can you have the DLA forms posted elsewhere? Contact your local CAB or Alz society, boith may be able to help you complete the forms without your wife present. It does not involve a signature from your wife or an actual assessment, the form is for you to explain the needs of your wife, and you will be able to sign on her behalf, saying that she would be unable to detail her needs as she is unaccepting of her illness.
Again I urge you to seek support, not for your wife but for you.

 

[PeterG]

Hi Gerry, just a couple of things to add, is your wife on any medication for depression? Jen is on Seroxat 30mg & I know this helps her day to day mood. We did go through several other depression medications over the last 4 years, and this one does work for Jen. I know this drug has had some bad publicity, but it works for us.

Second, maybe you have already been in touch with your local Alzheimers society local branch, there is one in Norwich. My local branch person has been very helpful with the disability form, gave me several tips how to answer the questions to get the middle range support, but I'm still waiting to hear if I've been successful.

Anyway, very best wishes,

 

[Norman]

I have found a lot of help from reading messages from other people on this site.
I think Gerry's situation is the nearest to a mirror image of my situation except that my wife and I are older.
We have 2 sons one lives in Hertfordshire and other older one does not visit very often,he says"he can't hack it!!! Most friends seem to have vanished.
At the moment I mange to get out alone once a week, twice one week in the month,I leave notes where I have gone and a phone number,I do not know what the reception will be when I return.
We have no back up,the nurse comes once a month to deliver the Aricept tablets which we have had for 7 years originally paying £140 per month until they became available on the NHS We are now in year 7,my wife's memory is now very little in the short term,I feel alone trapped,and can't see the way to get any help.
I love her dearly, we have been married for 56 years and I will never stop caring for her whilst I am able.
I do wonder why after being in a health care profession all my working life why we should end up like this?
Sorry to have a moan but I feel someone out there does care

 

[Sheila]

Hi, it seems we are all in up to our necks at the moment (Is it the moon or something?)
Every one seems to be struggling to keep the person with the illness happy, I wonder, what about us??
I am so sorry to hear about those of you struggling with a young partner, I am only struggling with a mum, although we do have other issues to deal with in the family, but not dementia!(Yet!)
I had a rant earlier, now, I feel sorry for someone else, so I guess this site is really working!
Please, get the DLA sent to another address, my mum would never have signed anything, but with this illness, you have to take over, it's hard, but you must, because they can't.
Also, get help, even if they argue, after all, when you analyse it, they are not in control, so what they are expecting of you is totally illogical and can be disregarded, although I know this is not easy emotionally. I really had to fight to get my mum to accept wen eeded help, that was just to go to the hospital assessment centre. From then, it was hard every step of the way. But I did it, day centre, night care once a week, respite, you have to, or you will go under. Believe me, I am down right now, wondering how to cope when she comes home from respite and thats a couple of years down the line. Spare yourself some of the grief I've had and sort it. sort it now!!
Love,
She,
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