I feel so helpless

[MrsP]

I am 26 and my father is 51. He was diagnosed with AD almost a year ago. The diagnosis was very hard to accept, but I had been aware that something was wrong. I live away from home, and I remeber telling my stepmother "That's not my Dad" when I went to visit. He has always been a very intelligent man, and he was unable to do very simple things like writing a cheque.

I try to visit as often as I can, but with a family of my own and a full time job it is hard. Trying to speak on the phone is a challenge as he is often too tired, or forgets the topic of conversation. I manage to keep up a brave face while I am visiting, but then get really depressed for weeks afterwards because I have already lost the Dad I know and adore. I know I'm not the only person going through this, but I can't seem to stop grieving. My husband is finding it hard to deal with me, and sometimes I wish I could pack up and stay with my Dad, because I feel like he needs me more.

 

[janey21]

try to be strong

hi there

try to be strong chick, i know it is easier said then done and you feel that it isnt your dad who you are watching but just remember the good times that you did have and memories are important. he is still the same person deep down and im sure when you visit him you will gradually realsie because he will come out with something that you just know it is him and you will giggle. it happened with my grandad i just hang on to that and be grateful for the fact that he had such a weird sense of humour. if you dont laugh you do cry and we dont want that.

take care
jane x x

 

[jeanette]

mrs p

Hi
My daughter feels just the same, she gets angry that she has lost her dad also, but you havent lost your dad he is just different.
My husbands happy in his own little world and it us as is family that have had to adjust to the change. your dad will always be your dad.
sending you lots of tlc
Jeanette

 

[Brucie]

Hello MrsP

you say "That's not my Dad" and that is the same thing I told our GP when Jan was around 55, already 5 years into dementia. "that's not Jan"

He said "it is still Jan, she is there if you dig deep enough". I consigned him to the bin of idiots at the time, but have had cause to re-think what he said.

At first when I no longer recognised the person who has been my wife for 37 years, I withdrew to save my heart and my feelings. But I could withdraw for a very short time, then I had to get back into hands-on caring of her, as there was no-one else. You can't do that effectively - or as effectively as possible - without feeling for the person, and to feel for the person you have to recognise them in some way, even if you fool yourself to do that, knowingly.

Gradually over time, I have realised that the GP was quite right, but to recognise that, I have had to get closer to Jan than ever before. Closer in understanding, closer physically and even closer emotionally. I have had to get past the mask of dementia for long periods, and then I catch occasional glimpses of the woman I married.

I have realised that she IS still in there, and is trying as hard to get to me as I am to get to her. It is heartbreaking, but it is my quest. It is like reaching through a swirling fog. Sometimes I see a whisp of a face I once knew, sometimes I will say something and it is like banging our heads together when she gives a really clear response. Sometimes she smiles or - like today - she laughs out loud, and it is as if the fog disappears, burned away by a bright shining sun.

You may have effectively lost him, and you will certainly be grieving, but don't give up on him, or on yourself, at least not yet. Keep seeking him, and he may be able to find you too. If that happens, for that moment, there could be nothing better.

Best wishes

 

[connie]

The times I have posted about losing the Lionel I know and love, but then he comes out with one of 'his' remarks. The latest being: If you meet up with someone else Con, I advise you to check his medical records first. Those of you who know our background will understand this remark. This can come at the end of a day when maybe he has not uttered two sentences all day. Just keep on digging, you never really lose them. Connie

 

[MrsP]

Thank you for your replies.

I have been going through a really low point recently, but after having a good talk with my boss, I realised that I can't be superwoman and cope with everything.

I have also spent more time with Dad, and managed a really good heart to heart chat, which helped me see that he is there, be it somewhat hesitant. Since then I've felt much calmer about things, and look to the future with a lot less panic!!

I'm pleased to say that my husband is being very supportive, I just had to open up a bit more.

Best wishes to everyone, love Kate.

 

[Isabelle]

guilty feeling

I am so glad i found this site dont think we have one like this in Australia. My heart goes out to you all as i know what you all are going through. How our lives have changed not what we planned for i bet. my husband is now 65 and had the AD for 9 years and has been full on since then, he has problems with mirrors and reflections. he is now in a nursing home and seems to be happy there, but i think im full of guilt, cant get rid of feeling so unhappy. We will be married 40years on the 6th november this year 2005 Regards Isabelle

 

[Brucie]

Hi Isabelle

if he is safe in the nursing home, and happy there, then that's such a plus for you. Enjoy your times visiting him, but try to build a life for yourself outside those times.

My wife Jan is 65 in October and has been in the throes of this since 1991, past 4 years in a home. I understand your situation.

How long have you been together? I found an important part of my 'therapy' to be to review our happy years. When Jan lost most of her personality and her smile, speech, mobility and vision, I was crushed. I couldn't recall her ever being able to smile, so I ran back through our extensive photo archive and pulled out all the laughing ones, to highlight that we had such a great time, once upon a time in the past.

I hang on in there with daily visits and have made a new relationship with her now she does not live with me at home, and doesn't know me. But importantly - and something that helps me continue to care effectively for Jan, albeit at a distance - I have started to build on the ruin my life became.

Not easy, and it helps to be a fatalist - when the time is right, it will happen.

Best wishes

 

[connie]

Hi, I so agree with Bruce. When I lost my first husband, after 35 good years, I rushed to the photographs, and drew upon all the happy memories.

Now things are slightly different, but still one has to be grateful for the good times. (Of course it would be easy to descry the good times and say 'why me, why now'. Sorry, but that is life, play the cards that are dealt, take comfort from the good times, and make the best of the rest.

Can say this today, (it has been a better day, but I do know what you are all going through), love and good wishes, Connie