I am so confussed

[Son]

My sister has just been diagnoised with alzheimers disease and we have been told that she is at stage seven. I feel like banging my head against a brick wall. I wonder what has happend to the health service as i feel we should not be finding out at this stage. My sister has been ill for at least 8 years with memory problems and the G.P and Psyciatrist back then said she had a mental health problem put her on some medication and then discontinued it a couple of years latter. Her symptoms have progressed to the stage where co-ordination has gone, speech is difficult , memory is very poor. The consultant only carried out an MRI a year ago as her speech was failing and the we had to wait to see a neurologist which we did in set this year and many test later we find out last week that it is A.D. I feel cheated !!!!1 I also feel for my sister but what i carn't cope with is the paranoia she is suffreing i have been told by the consulatant and CPN that it is this. The thing is she sees things/people in the fire around the house on a daily basis and realises they are not real but at night time she is convinced that there is a woman in the house and believes this is not an hallucination. I find this hard because she is aware that she sees things that are not really there.

Is anyone else experiencing this if you are can you share you experiences with me.

 

[allylee]

Hiya, one of my mums first symptoms of AD, aside from memory loss was paranoia. The psychiatric team were involved for some time too, before I was told that it was AD, that was two yrs ago, and only recently theyve told me that shes at stage 5. Im not sure why , but I dont feel that the psych team are very up front with us relatives ??The paranoia has been a constant feature for mum, she believes that people come into the house and steal things, hence she hides stuff, and then when she cant find it, somebodys been in and stolen it....a vicious circle!
When mums particularly paranoid , I do try and be extra patient, and reassuring, but I appreciate how hard this can be, especially when she considers that Im as suspicious as everybody else.
Chin up, accept every bit of help you can.
Ally xx

 

[rummy]

I know that AZ is diagnosed by a process of elimination since they have to look at clinical results and discount all other dimentias. I also was very frustrated, knowing my Mom had "something" but not being able to convince her doctor to pursue it, or my parents either for that matter. Mom is in latter stage now and sees all manner of things and events that aren't real.
I wish they had gotten an earlier diagnosis because the medication could have given her a couple more lucid years. But we have what we have and are doing the best we can.
Take care,
Debbie

 

[doris]

We haven't had a diagnosis yet. Been for MRI and other tests but am still waiting for a follow up appointment after being told if was anything serious we would of been informed! My friend suffers with paranoia and sees people in the corner, won't except that this is his house, he thinks somebody has stolen his furniture and put it in 'this' house..We also see animals and as we live on a farm this can be hard as he sees people stealing animals that aren't there. This doesn't happen all the time he seems to go in and out of these stages, when he is good he's good but bad can be very frustrating especially after a sleepless night.
I am at the point that i dread putting him to bed as i don't know what the night or day is going to be like. I have to confess i am on a short fuse some days and have to act that everything is ok when i just want to walk away. I get down in the dumps and feel sorry for myself but am lucky that i have a few friend i can whinge at and that helps a bit.
I can also whinge on this site which also helps
thanks for listening
Doris

 

[Son]

Thank you

Thanks to everyone who has shared their experiences with me. My sister too hides things and believes people pinch from her every time i go to see her she gives me something to take home to look after. At the moment she belives her socks are being pinched although the other day i found some socks behind the bed and some in her draw. I have to chuckle to myself or i would cry. The worse thing is she does'nt look ill, she looks well and healthy. My sister paranoia also seems to worsen in the evenings say around 6ish onwards. Is anyone else experiencing this. I carn't understand why it does the CPN suggested that we give my sister her medication at tea time to see if it will help.

Once again thank you for your kindness.
Son x

 

[jc141265]

Increased problems around sundown time is common and is even referred to as 'sundowning'. On not getting a diagnosis for so long, on one hand it is absolutely terrible and god knows I know the frustration personally of trying to tell doctors you know that symtpoms are from something important and are not trivial or 'in one's head' but on the other hand, please don't be overly hung up on the fact now, that the misdiagnosing is over, because enough time has been wasted due to their stuff ups and failures and no doubt a lot of that time caused great anxiety and frustration for yourself and your sister.

However, I do not think that an earlier diagnosis will have made much difference when it comes to the progression of the disease. Yes there are now medications out there that apparently 'slow the progression' of the disease, but it is all relative. My father initially diagnosed at 55yrs of age has had symptoms for about 6-7 years and has been on such medications the whole time and it sounds like he has progressed much further than your sister (doubly incontinent, can't talk, can't perform any activities alone like eating, drinking, dressing, anything that takes coordination other than walking). Also, whilst there is always hope of some kind with mental illness, the only hope current Alzheimer's sufferers have is for a miracle cure to be found and approved overnight, or that the disease will take a slow course (later, we begin to hope it will happen more rapidly however). So although this is a horrible thing to come to terms with now and although you will probably think I am nuts for even suggesting it and no doubt completely insensitive, in a very small way I think you were lucky that you haven't had to live with the depressing realisation of Alzheimers for the last 8 years. In no way however am I belittling the pain and difficulties that would have come from the other diagnosis and the pain that you must be feeling now with this even more dreadful diagnosis. All my best wishes for your sister and yourself.

 

[Claire D]

The worried mind

I have just joined Talking Point as my Mother now suffers from Alzheimers as well as Parkinsons (which was diagnosed about 7 years ago) and also osteoporosis so she is now about half the size she was!! I have found great comfort reading the stories posted on this site as I now realise it is not just my Mum who is in this very confused state but there are so many. Unfortunately I upset her a lot last week as she was convinced the people who live in the house (there is only my father!) had stolen her face cream which was in a box behind the fireplace (we haven't had a fireplace for years....). Of course in her mind she is back in her home in Dover where she was born and I hadn't realised that and tried to have a rational conversation with her which ended in tears hers and mine! Dad is her full time carer and it is hearbreaking to see that over 40 years of memories have been wiped out and sometimes she doesn't seem to appreciate everything he does for her. I go up and look after her on Wednesday afternoons so he can go to his Art class which sometimes is distressing because she doesn't remember she has had a child (me) so we have some very interesting conversations as the parent/child relationship isn't there but the adult/adult one is - sometimes I'm not too sure I want to hear some of the things she talks about (vis a vis her relationship with my Dad and me over the years) as in her mind I am just "the nice lady who comes to visit"! My main difficulty is getting Dad to agree to some more help. I'm not too sure whether it is good for either Mum or Dad to be in each others' company for so long without some respite as the on thing that was always their strength - communication - has now gone because she is in a totally different place (in her mind) than where Dad and I are.
Has anyone else found themselves in a position of being a carer of a carer? How do you persuade a relative to contact the Carers Association and talk about some respite help? I don't have any brothers, sisters, husband or children of my own - so have felt a bit isolated until I discovered the site. Any thoughts on a postcard please!! Thank you!

 

[Jude]

Dear Son,

My father suffered from delusions during the early years of his dementia. He was totally convinced that people were stealing his money, his shaving gear and his clothing. Consequently, he used to hide everything and we would spend hours looking for stuff which always turned up in the most extraordinary places.

He also believed that there was an 'extra' person living in the house with whom he would hold conversations during the evenings. Initially I would try and reassure him that this wasn't happening or possible. Eventually it became easier to agree with him. During our discussions, it became evident that it was his brother John [long deceased] who was living with us.

Once we had 'identified' our 'lodger', my father was very much more relaxed about having him in the house and used to look forward to having his brother around to chat to at night. We also had somebody to blame for the missing shaving cream and hair oil too! John was pretty useful really in a lot of ways.

My call on this is to accept that this it is okay to have 'extra people' in the house. It's a whole lot easier to go along with the delusion than to waste your energy in fighting it. The presence of Dad's brother in the house was a source of comfort to my father and eavesdropping on 'their' conversations gave me a great insight in to how my father was feeling on a day to day basis.

Maybe the lady living with your sister needs to be given a name and an identity and she needs to be a friend or relative or become one as soon as possible. Not much point in having an unwelcome and scarey house guest is there? I often wonder if AD patients 'invent' a special friend in rather the same way that children do.

I'd be inclined to go with the flow. Hope this helps a bit.

Jude

 

[Jude]

Dear Claire,

Postcard from Australia just arrived.........

My post to Son might help a little with the delusional side of things.

Both of my parents have AD but are at different stages and have different symptoms and therefore my father has really always assumed the role of principal carer for my mother, with me as being the backup carer for both of them. It's a very tricky line to walk sometimes, although in my case I had to take over and make all the decisions ultimately.

There are other members of TP in your situation where they are carers of carers - and it normally involves elderly parents with one having AD.

I do empathise with your situation. Your parents have 40 years of married history and mutual caring behind them and you are still effectively 'the child'. It's pretty hard to cross the line to become an adult on equal terms with your father - with your mother's safety and wellbeing as your common goal. You have to tread very softly so as not to interfere with their married/parent status. It may take time and patience to convince your father that he may need some help, if not for now but in the immediate future.

Just keep sowing the seeds, backed up with a great deal of reassurance. Many people feel that they should be able to cope in these situations and find it very hard to accept assistance from the outside or even admit that it is come to the point where they really do need a bit of help.

Help can mean just that. It doesn't necessarily mean a major change in any domestic arrangement. That may be your father's main worry and he may be very fearful that their life together will be forever altered if he asks for support from the SS.

Perhaps your father needs to really understand that you will be right there for them all the time too. I'm sure you've told him that a hundred times, but keep on telling him.

Gentle and patient, persistent persuasion can often lead to the best result. Good luck.

Jude

 

[Brucie]

Has anyone else found themselves in a position of being a carer of a carer?

Hi Claire, well, no, as I was/am the carer, but my Mum was similarly concerned about me - sounds like I was like your Dad.

Frankly, all you can do is be there, say you will be there, until he is ready and in a position to want and accept help.

Took me ages to get to that position, and people trying to move me on before I was ready just made my position more difficult, because I felt I was letting them down, as well as letting down my wife Jan, for whom I was/am the carer

 

[Mjaqmac]

Dear Claire

My father and I both cared for mum til the end.

Mum and dad where married 58 years, she died in March. I too experienced what you have. The conversations about dad as though he were a stranger. Neither did she know me at times and yes, dad, mum and I all ended up in tears many times.
Sometimes I would speak to mum about her own life as if I was speaking about another person. Or I'd tell her about my wonderful mum. She was fasinated and wanted to hear more. Something was touching her inside, something familiar of the stories. It did no harm and she enjoyed it.

What you're doing for your dad in giving him that afternoon at his art class is the best thing you could do for him. You don't understand how much you are supporting him already by doing this. Simple actions mean so much to a carer.

Respite would be a great thing if you could get your father to agree. Dad and I went around a lot of places while mum had a few hours in day care, found a wonderful place and started respite which allowed us to carry on til the end. Would it be possible for you to have a look around places and encourage your dad to come to one that you like. It won't be easy at first to see these places but some are wonderful and you will be surprised at what exsists. I swore mum would never go into respite but I had to do it for all our sakes and it was a good move for the family.

I know this is a terrible situation. My heart goes out to you. But you can make this better. Give yourself a pat on the back for the support you're offering your dad and mum. Some simply turn their back. You're a wonderful daughter and should be aware of that. This is not an easy road for anyone and you are doing your very best.

Best wishes.

 

[Sandy]

Hi Claire,

We were in a simlar situation with my father-in-law (FIL) who has AD and my MIL who is his sole carer. We live over 90 miles away and, apart from weekend visits, are not able to be of any practical help.

We became concerned about my MIL leaving my FIL alone in the house when she went out to run errands or do shopping. He is quite frail (he also has myeloma, a form of bone cancer) and we did not think it was safe to leave him on his own. We were also concerned for the future in that if he needed increased care at home we wanted to know what the options were as soon as possible.

I had never had any dealing with Social Services (SS) before and neither had my MIL. I asked her if she would mind my contacting them just to see what help was available. She agreed. I called her local authority's SS team (they have a special older persons team as I later found out) and answerred some basic questions over the phone and then an assessment appointment was scheduled for about 8 weeks time.

I went to my in-laws house to meet the social worker at this initial appointment and it was a real relief for all of us. She was very friendly and professional. She told us about attandance allowance and suggested to my MIL that she get a carer to come in two or three afternoons a week to give her a break and to be sure my FIL was safely cared for.

MyMIL was sceptical as to whether or not my FIL would accept this, but has been pleasantly surprised by the results. He has been fine with the outside carer (who only keeps him company and does not undertake any personal care) and seems to enjoy the new face.

What was important in our case was that my MIL felt that she was in control of the arrangements. She could try the new routine and it it didn't suit, she could stop it. Calling in SS did not put her and my FIL on a one-way track to a care home placement.

You can't push your father into accepting help when he's not yet ready, but you can be supportive in suggesting he at least give it a go and judge the results for himself and your mother.

Take care,

Sandy

 

[daughter]

Hi Claire D,

I can relate to your situation because this is where I was 18 months ago, with my Mum caring for my Dad who was diagnosed with Alzheimer's after they had been married for over 50 years. Although I am lucky because I have a sister who was similarily concerned, and talking about it reinforced our belief that we had to push Mum into doing something. This can be tricky without appearing like a bully but standing back and watching my Mum becoming ill with the strain of it all is something we just could not do.

As Jude says, we just kept "sowing the seeds". Mum would not entertain respite care but she finally accepted Dad going to a Day Centre, giving her a break for a couple of times a week. Times moved on and eventually we made an appointment to visit a Care Home. Whenever we spoke to Mum about these major changes in their lives, I felt really bad because it naturally upset her, but eventually I think she also came to realise that they were the best options in the circumstances.

If I were in your shoes I think I would ring the Carers Association myself and ask them what they would advise (I'm sure they deal with this situation all the time). Find out all you can about respite help yourself, so you have the facts at hand to give your Dad when he decides the time is right,

Best wishes,

 

[rosie777]

Respite and Daycare

In the beginning, my mum would never had entertained daycare....not the sort of thing she would have ever had anything to do with....that sort of thing was for other people, but as time went by, I took the bull by the horns and called in a Social Worker who did an assessment and I decided that mum would go into daycare one day a week. The first time I took her I fell apart. I cried and mum was not happy one bit that I was leaving her in "this awful place". After 4 weeks, I nearly threw in the towel as it was a real trauma every week with mum asking "where are we going" and stating categorically that she would not go, however, I persevered, and, as mum gradually declined in her mental awareness, she became more accepting of the routine and now she is absolutely settled in daycare and the time has increased to a maximum of three days a week. I get a chance to have long hot baths, catch up on my housework and shopping and in the spring and summer, get a chance to do some of my precious gardening. The thing here is not to feel guilty. The regime is gruelling enough without beating ourselves up over things which cannot change. We all know where this disease is going and we can only do our best and let's face it, for those of us doing the caring at home, we are doing a brilliant job. So, for all you carers out there, give yourselves a big pat on the back. There are some who would turn their backs and walk away but we are bigger than that. We not only have to look after our loved ones, we also have to look after ourselves too. Our life will go on after and we need to make sure we are strong enough to live it.

 

[cynron]

day care

Rosie .

I could not have put it better myself in perservering with resistance to day care. My husband did not want to go but he now looks forward to it. he is well fed he likes his FOOD. He is also motivated by the many activties the caring staff put on. He dances with the ladies who outnumber him, and i of course realy can charge my batteries and give him a big welcome when he comes home because i am less stressed than having to cope all day.

love to you all

cynron

 

[Lynne]

I persevered (with taking her to day care) and, as mum gradually declined in her mental awareness, she became more accepting of the routine and now she is absolutely settled in daycare and the time has increased to a maximum of three days a week. I get a chance to have long hot baths, catch up on my housework and shopping and in the spring and summer, get a chance to do some of my precious gardening.

The thing here is not to feel guilty. The regime (of AD) is gruelling enough without beating ourselves up over things which cannot change. We all know where this disease is going and we can only do our best and let's face it, for those of us doing the caring at home, we are doing a brilliant job. So, for all you carers out there, give yourselves a big pat on the back. There are some who would turn their backs and walk away but we are bigger than that. We not only have to look after our loved ones, we also have to look after ourselves too. Our life will go on after and we need to make sure we are strong enough to live it

Give that Rosie a medal! The guilt monster is the 2nd biggest problem here (apart from the devastating effect on families which an incurable disease has) and her purple paragraph ought to be printed on large posters & displayed around the country. Decent people here give themselves mental & physical breakdowns because of some mysterious expectation that they can 'save' their loved one if only they can keep them at home and hold them tight and surround them with love. I do SO wish it were true, but it's not ...
(And yes, I expect when the time comes I shall say "oh but my Mum's different" and lose the objectivity with which I try to see things now).

 

[Norman]

I find that the guilt never goes,not even after 7/8 years.
It may not be as strong,but it is still there.
What does happen is that as a carer you realise that if you crack up your loved one will end up in a home and you will be unable to care for them at all.
So-you ride the guilt and take time out because you know the outcome if you don't.
But the guilt monster still hovers in the background,it goes hand in hand with regrets.
Norman

 

[Claire D]

All your good advice....

I can't thank all of you enough for replying in such a positive way and the confirmation that I am on the right track. I have already contacted the Carers Association and given the details which were sent through with Dad - he has now at least opened he pack but not done anything else with it. So I will continue with the drip feed, gently, gently approach and at least I can share with him your thoughts and comments.

Mum & I did have a lovely time last Wednesday when I took up a small table top Christmas tree to decorate (this is something that she and I used to do when I was a child - make decorations, cards etc..etc.) so she was in charge of the planning and I carried out the tasks!! It warmed my heart to see the pleasure such a simple thing gave her - so this has given me some thoughts about what else to do when I go up on Wednesdays so we keep away from some of the difficult and upsetting conversations which fill 3 hours........ I did wonder about taking an easy puzzle book with me which I could fill in but ask her what she thinks the answers are so we work together? Bit like with educating children. The thing is when she is "in the moment" she is still very articulate so I'll give it a go and see what happens. I suppose I look upon it now as a journey of discovery for all of us.

I wish you all a Happy Christmas, peace, love and caring in 2006.