Is there support ?

[pussycat]

Hello everyone,

My lovely husband has had mild/moderate Alzheimers for 4 years now. I am his sole carer and have noticed lots of changes recently, there is no conversation he just watches me constantly and then smiles when I look at him which is heartbreaking. We have 3 children, a son who lives in Australia and 2 daughters here, one who is very supportive and the other who is not. My husband was recently diagnosed with penile cancer and has been in a cancer hospital to have a partial amputation. I was allowed to stay with him and had a "put you up bed" in his room. The staff were incredible they really couldn't do enough for us and all kinds of help was offered both practical and emotional. We are home now and are waiting to go back to the hospital for histology results. What a difference to when Jeff was diagnosed with Alzheimers, apart from twice yearly memory tests at the memory clinic we have been left to get on with things by ourselves. Now I really don't begrudge cancer patients any kind of help or support but why isn't there the same for people with Alzheimers ? Macmillan cancer nurses will go on home visits when needed, even if it is just to talk, are there similar nurses to visit Alzheimer patients and their families in their home environment ? It is such a lonely place to be in now and it would be such a help and a comfort to have someone to talk to face to face.

Thinking of everyone out there who has a loved one with this terrible illness.

regards pussycat

 

[concerned1947]

I live in Worcestershire and have been able to get support for myself from the local Admiral Nurse who is wonderful. The CPN is there for my husband. I am currently going through a nightmare because of my husbands deterioration and she is on the other end of the phone if I need her. Your local Adult mental health team should be able to tell you if there is an admiral nurse local to you. Also the local Alz Soc have support groups. My adult mental health team also has Dementia Advisers who can signpost you to support. This support network is essential for me as I am isolated without family support. Hope you are able to find similar support.

 

[Dinah22]

I don't think the AS has any qualified staff that are able to visit and advise you, but the health service does. Could you contact the memory clinic where your husband was assessed as this is part of the health service and a psychiatric nurse may be able to visit you and your husband. Other than that you could contact your nearest Social Services dept. Hope this helps.

 

[Grannie G]

there is no conversation he just watches me constantly and then smiles when I look at him which is heartbreaking.

It really is heartbreaking. It`s hard enough to read, never mind live with. So sorry.

 

[SchrodingerCat]

There is but you have to battle for it

I am a remote carer so not quite in the same boat but we have managed to get support through mums occupational theraPist; who has got practical items like an electronic drugs box sorted out, attendance allowance and dealt with the social wOrker to put together a care Package. And she has been terrific - the care package is set up to suPport - providing assistance to do what mum can still do and Provide pragmatic help including physical assessments to ensure that her physical health doesn't deteriorate. The iccupatiOnal therapist comes as part of the Psychiatrist service so insist that yOu get one

 

[Doe]

My heart goes out to you. I am in a similar situation. When my husband was diagnosed 7 years ago we had a nurse we could contact but since Memory clinics were brought in in our area we see a Doctor twice a year and that is it. As my husband's condition has deteriorated I have had to search for solutions to each problem myself. At times I have felt in the depth of despair because there is only the two of us. I saw an advert for Crossroads and contacted them. We now have a carer comes in to sit with my husband 3 hours a week which gives me a short break. I contacted social services last November and it was March before they got back to me and then they did not seem very enthusiastic about offering assistance so we agreed to leave it for the time being. At the moment my husband has left his silent stage and now talks or sings non stop. I don't know if this is normal or how long it is going to last but as we do not see the Memory clinic until December there is no-one to ask. I totally agree with you that other illnesses do seem to get far more support. I am so pleased that they allowed you to stay with your dear husband when he was in hospital as it must have been a very confusing and frightening time for him. i do hope that the histology results are good.

 

[Padraig]

Support?

I've not been able to post for the past week due to being very ill. I'm afraid there has not been the support there for me when I required it Thursday I could just about make myself understood as I phoned for a GP to visit me. For months I've tried to find some kind of support in understanding the after effects of major surgery for Gastric Cancer. Phone calls resulted in answering machines and promises but nothing happens.

It was not unlike the 'support' I received when I cared for my wife. In that case it did not matter as I decided to avoid the stress and frustration of dealing with outsiders and just got on with the changes in life as they presented themselves. In the process I learned so very much about the Alzheimer's effects on my wife, but nothing about financial help. That didn't matter as I was capable of providing a good quality of life for both of us to the end.

I'm now having to learn the hard way once again. When I first arrived home after my operation I had about four visits from nurses to change my dressings and that was it. A GP prescribed 30mg capsules of Lansoprazole, one a day. Months later there was no improvement and another doctor upped the dose to two a day. Four months ago I ceased taking all medication. When things became worse in the past weeks I stared back on the medication.
Yesterday a different doctor asked why I was taking the medication? It is no good and is useless as you have no stomach! Now I'm on new medication for a while and if there's no change I'm to have a scan. There is another lesson learned.

 

[Contrary Mary]

One of the reasons I am now having to consider putting Mum into care is the "support" or lack of. I am a sole carer so would have to spend considerable time caring alone. Even our admiral nurses have, since one retired recently, been cut from two to one for an entire London borough

 

[sunray]

different country, same proiblems

I have just had to place my husband in a nursing home as I never got the support I needed. I "qualified" for fifteen hours a week of showering/assistence/respite etc and never got more than five. It is as if there is a great assessment system, so they can tell we qualify, but no follow up to put that care into place.

Ray is now two person assist full-time and there is only one of me so I had to give in to placement. And as we all know that is second best.

Sorry Padraig that you are not getting the help you need yourself when you gave so much for so many years.

Best advice pussycat is keep on asking for help, often it is the "squeaky wheel" that gets fixed.

Sue.

 

[Padraig]

Sue,
I'm sorry to learn that you had to place your husband in a NH. Thank you for your commiserations on my problem. I had a good night last: no pain till around 10AM today.

I'm learning to come to terms with coping and try to stick with the manta: 'Always look on the bright side of life.' That song always cheers me up and makes me appreciate all the more the hours and days when I feel OK.

The feeling of well being this morning at 04.20AM prompted me to go for a run. I like to make the best of what time I have. No longer do I fear death. Fear is the unknown and at my age I know it's running out fast. My quality of life is vastly diminished since the passing of my soul mate.
On bad days, it feels as though the whole of my inside is on fire as it comes and goes on for days at a time. However my suffering is as nothing compared to that of those with years of AD torment.

 

[Nebiroth]

I always found the disparity between the care and support for "popular" diseases like cancer and Cinderallas like dementia (or, frankly, any sort of mental illness) infuriating.

There are probably many reasons for this; cancer is perceived as being an imminent threat to everyone with horrible symptoms and very unpleasant treatments (the "this could be me" factor), whereas dementia is thought of as just being old people being a bit dotty. Also, cancer is often curable - dementia is not. Many people find mental illnesses distasteful to deal with and the symptoms cause embarassment. And yes, I know lots of people who don't perceive of mental illness as being "real" illnesses at all. Apparently, if your legs break, you're a victim, if your brain breaks then it's a weakness of character.

Sadly, the public thus support any amount of expenditure on cancer care - in fact, I think it's probably the disease that you can find almost unlimited and unquestioning support for because it absolutely terrifies the public who regard themselves as looking down a gunbarrel all the time.

 

[pussycat]

Thank you to everyone for your comments/advice. This is the first opportunity I have had to reply. I am feeling so sad and so lonely I can't stop crying today. We should be in Australia now visiting our son and his young family (aged 1 and 3) but I had to cancel the trip because of the cancer being diagnosed. I now don't know whether we shall ever go there again. I don't know whether it would do my husband any good to make that long journey, he now says our son is his cousin when he sees a photo of him so I feel I would be going for selfish reasons but then there is a part of me that is saying "what about me, I want to see my family". Since Jeff had his operation the alzheimers seems to have taken a turn for the worse or is it a coincidence. I really don't know I just know that my darling Jeff has gone further away from me and I miss him so.

 

[Saffie]

The trauma of an operation can make dementia deteriorate. My husband deteriorated rapidly after he had an emergency amputation a year ago this week. He had mainly Vascular dementia with some Alzheimer's as well. So maybe it depends on the type of dementia, I'm not sure. I am so sorry your husband has had to suffer this operation too. Sorry too that you are feeling so down and can empathise with your unhappiness. It appears as a dark tunnel, doesn't it, especially on a Sunday for some reason. I always start Sunday off in a very positive frame of mind but it never last and I always end up in tears. So much unhappiness caused by this illness, to sufferer and carers too. X