family heartbreak

[pete kelly]

No one could ever prepare you for the heartache as the later stages of Alzheimer's take place.

My susie has deteriated so fast in the last few weeks it is frightening. Halucinations,fear, suspicion,flashbacks, are happening all at once, medication is not helping other than lorazapan to try and calm her for a short period.

In agreement with her specialist we will not let her go in to hospital as she fears this so much,it may give me respite but no more can be done for her than I can do,she is my life,the pain I and my family feel,is nothing compared to the fear in Susie,sreaming, sobbing for hous at a time,no one can comprehend what is truly happening in her head.

Has anyone experience of this behaviour and what did you find to help them

 

[Grannie G]

Has anyone experience of this behaviour and what did you find to help them

No I have not Pete and am really sorry your wife and family are having to go through so much pain.
My husband had hallucinations, delusions and fear but they were not as bad as Susie seems to be having.
Surely the doctors could try a little harder and prescribe something to ease her suffering.

When my husband became very aggressive I told the doctor I would prefer him sedated and at home than less sedated but in hospital or residential care. The doctor cooperated with me and enabled me to keep my husband at home for a further 18 months.

 

[Sandy]

Hi Pete,

I have always read your posts about Susie and been moved by your devotion.

The pictures in your album show a lovely and vital lady.

I'm sorry that I have no first-hand advice to offer you, just sincere sympathy. It sounds like you have a very understanding and supportive consultant. Are you getting any other outside help or regular visits from a CPN?

I agree with Sylvia that medication to keep Susie as calm as possible should be a top priority. It must be very difficult to manage this all from home, as opposed to a medical setting with nurses to hand 24/7.

Have you noticed one of our more recent members loggerman who's wife also has early onset?

Here is one of his recent threads:

http://forum.alzheimers.org.uk/showthread.php?t=24388

It might be worth contacting him by PM if he has not got into the habit of checking TP daily.

You might also try contacting Admiral Nursing Direct as they now have a national support helpline:

http://www.dementiauk.org/what-we-do/admiral-nursing-direct/

Take care,

 

[Izzy]

Hi Pete

I have no experience of this stage of the disease. I just wanted to say how sorry I am that Susie and you and your family are experiencing so much suffering. Izzy x

 

[louise@weinprop]

Hi Pete - I so know what you are going through as my husband was diagnosed at 55. I tried to keep him at home as long as possible with the help of a nurse, but with me working all day and him becoming violent and incontinent, it became impossible, hence he is now in a very good care home. He is now 63 and has been through that very aggressive, crying, tormented stage and his doctor eventually prescribed Risperdal for him. I was unhappy at first as I knew this was an anti-psychotic drug, but the change has been unbelievable. He is much calmer, and peaceful, and if he feels more relaxed and at peace, then so do I. I live in South Africa, but I am sure this drug is also available where you are.
Good luck and my prayers go out to you and your family, please remember you are not alone.
Louise

 

[DianeG]

Pete,

My heart goes out to you. You sound so like my dad and I am immensely proud of how he supports my mum.

My mum is at the same stage and it is scary and you can feel helpless at times. We have learnt to ride the hallucination out with mum by reassuring her that it is only us int he room and that she is safe etc etc, gently stroking her hand and sitting my her side. Sometimes it works and sometimes we just have to keep repeating it over and over just be there for her.

The aggression is a toughie and one I personally still find hard to cope with. We can only try to go over what we said or did and how we did it to see how we triggered a behaviour in mum. Usually mums triggers are our inability to understand what she is saying and she gets frustrated. Her speech is gone and nothing makes any sense to us but probably complete sense to her.

Basically we just try to show love, affection and comfort for mum. Sometimes it works and sometimes I'm afraid it feels like we get it so wrong. We stay resiliant and try though.

My mum had to finally move into a care home just last month at age 58. We are trying to now focus on sharing good times with her rather than the day to day routine of washing, dressing, feeding and toileting.

Keep posting on here Pete. I think the support is invaluable.

Take care,
Diane