New firsts

[annesharlie]

Now, into month 2 after the diagnosis I find it so hard to deal with some of the new "firsts" that have been happening. For the first time, sometimes when he speaks Ron does not always make sense - it's not that the words or sentence structure is wrong, it's just that I can't follow his thought or "get" what it is he's saying. It seems like the confusion in his head just comes through. Also, he's almost given up on every job around the house - but traditionally he's always fed and put the dog to bed. Just last week, he forgot to do that a couple of times - so I've asked - Did you put Patches to bed? Then last night he answered yes, but I found later actually that he didn't, the same when he came home on his little scooter and I asked, - Did you remember to plug it in, and he said yes, but in fact it wasn't.

After the flurry of initial appointments is over, I find that settling into this new reality is very difficult and actually depressing. I have no control and feel that decisions regarding our lives are completely in the control of the disease and I have few choices left, I am shuffled forward in this queue, I don't know how long it is and I don't know exactly where it is going, and I certainly am not able to get out.

I know nothing said here can really change things, it just helps to write this down and look forward to your kind responses. I'm feeling vulnerable as this week is the appointment at UBC.

 

[jenniferpa]

I really don't have anything to say, except that I think your description of being in a queue is one of the most accurate analogies I've seen of the experience of being the family member of someone with dementia.

Love

Jennifer

 

[Tina]

Now, into month 2 after the diagnosis I find it so hard to deal with some of the new "firsts" that have been happening. For the first time, sometimes when he speaks Ron does not always make sense - it's not that the words or sentence structure is wrong, it's just that I can't follow his thought or "get" what it is he's saying. It seems like the confusion in his head just comes through.

Dear Anne,

what you describe above is almost exactly like what happened to my aunt. With my nan, the progression of the disease was slightly different. But I remember how upsetting I always found it when I noticed yet another thing she couldn't do any more. Making a cup of tea. What to do with the coffee spoon. Combing her hair. Finding the right clothes and putting them on.

She too communicated in full words and sentences until she had a massive stroke, but what she said wasn't making sense any more. At the beginning, it was just little things that she couldn't get out but through her descriptions and by listening carefully, we often knew what she was trying to say or who she was talking about.

Sorry, this isn't going to help at all, just wanted to let you know you're thought about as you embark on this journey with your husband. But, between the moments of sadness and tears, there are little things to brighten the day. I know it's really hard, and you don't ever really get used to the person gradually disappearing before your very eyes. And because we're always watching out for things to happen, we notice the deterioration. And when we compare to how the person used to be, it's just like a massive blow.

Later on, years into the disease, I used to look for things my nan and aunty could still do and we were always so pleased when we found something they still enjoyed and could still manage. Going out for a walk or a ride, watching tv together, reading the newspaper, looking at books and pictures, flowers in the garden, trips down memory lane...But watching the deterioration is still heartbreaking, even though there are so many precious moments which I wouldn't want to miss today.

Thinking of you,
Tina

 

[mickyinlondon]

Dear Anne.

My Rita is like that; but I just cover everything; by assuming that what they have said they have done; may not be a fact, so I just say fine dear, and then check it all for myself; sometimes she has done things right; most other times she has done nothing at all; she just thinks she has.

Do not expect things ever to be the same; because as much as your partner wants to help; he cannot. I think you should try and let him do as he has always done, then just check it all.

Do not get frustrated; just think of when you had to do the same for your kids, it’s much the same thing. If you let it affect you; then it will affect you; so smile, roll up your sleeves; and be thankful you are not your partner.

Like you I face worse to come; but even then it is all about how you see things, and how you react.

One day at a time seems to be what most on this forum say; and that seems about right to me now. Remember the man that was, like I remember the girl that was; they are still there inside, and treat him; like you would want him to treat you, if your roles were reversed.

You are stronger than you think; it just that at this moment in time, you may not know how strong you really are.

I don’t plan anything anymore with Rita; because nobody knows the future; but this is true of all older people, we all may be gone by Christmas.

So I think roll up your sleeves; do your best, nobody can do more than that…Micky.

 

[Grannie G]

. I have no control and feel that decisions regarding our lives are completely in the control of the disease and I have few choices left, I am shuffled forward in this queue, I don't know how long it is and I don't know exactly where it is going, and I certainly am not able to get out.
.

Dear Anne,

It will be of no comfort to you, but you have hit the nail on the head for me, and I suspect for many others by the way you see your life.

I identify with the loss of control, the lack of choice, and this timeless, endless queue, and feel imprisoned by what life has sent us to deal with.

It is depressing, and we either sink or swim.

I feel I have coped quite well so far, but am feeling low just now and having to fight it. If I don`t fight it, the alternative doesn`t bear thinking about.

I believe you are still in a state of shock. Two months is a very short time to come to terms with this awful diagnosis, if indeed you ever come to terms with it.

All you can do is your best, under very difficult circumstances.

I`m sorry I can`t be more helpful or more hopeful.

With love xx

 

[Skye]

I'm in that queue too!

I've been in it for seven years now, and the end is not in sight. I keep telling myself, if it doesn't get any worse, I can cope. Then there's another downward slide, and I panic. Then I come to terms with the deterioration, and tell myself, 'if it doesn't get any worse................'

I'm afraid the queue moves in fits and starts, just like in the supermarket. A plateau, a slide, another plateau.............

And still I can't even see the checkout.

You're so right, Annesharlie. I haven't any words of comfort for you, except that you're in good company. Stay with us, it's a bumpy ride, but the support is here.

Love,

 

[Westie]

Anne,

I understand exactly what you are feeling. It has been 8 months since Peter's diagnosis so I am a few places ahead of you in that interminable queue.

Immediately after diagnosis I was in shock and this lasted quite a while. I coped by being incredibly busy and practical. Lots of appointments for Peter, reading everything I could find on FTD, endless form filling for benefit claims, arranging wills, EPA, being Supermum to children as felt so awful about them, putting on SUCH a brave face for the outside world. I was coping and Peter wasn't too bad.

But after a few months, things changed. Appointments were 'come back in 6 months', the phone stopped ringing every hour, paperwork was up to date and there I was with Peter who was no longer the husband I knew. Then I really started to notice the changes. Like Ron, he can no longer be trusted to carry out any everyday task. He may say he has/will do it, but he no longer does. In fact he now does absolutely NOTHING around the house/garden at all. He has lost all interest in our old lives and refuses to answer letters/ telephone calls or e-mails from friends or colleagues. My daughter writes replys for him (aged 10) but even she is beginning to give this up as Peter is so horrible to her most of the time.

A first for us today was Peter standing by my car on the drive for an hour as he wanted me to take it for a car wash. I really didn't want to go and didn't have the time either so told him we weren't going. He repeated over and over and over again that we must go. He even went and found keys which luckily he dropped so I put in my pocket for safety. he refused to come inside and just stood there. What to do? I can't physically move him around (in fact another first is he has started to shove and push me around) so I just had to leave him standing there. What a pathetic sight he looked and it breaks my heart.

I feel as if we are now living in slow motion. All the fun seems to have gone - nothing to look forward to but nothing I can do about it at all.

I don't know what to say to you really apart from I am with you in spirit. There aren't any answers. I am amazed at some of the people who post on here - they are so up beat and cheerful. Have to confess I am finding this all really, really hard now - perhaps harder than a few months ago. This is my new reality and I DON'T LIKE IT.

Love Mary-Ann

 

[Grannie G]

I really don`t know how those of you with young children cope. It is a totally different situation, when your own children still need nurture and care, and a big chunk of it has to be syphoned off to your partner.

 

[Westie]

How are things today Anne?

When is the appointment with Ron's consultant? I expect you are focusing on that this week. Will Ron's medication be reviewed - do you feel it is helping at all?

Does Ron still enjoy getting out and about on his scooter? He looked great in the picture you posted and it's great for him to keep that sense of independance. Peter is 'enjoying' using his free bus/train/tube pass and has taken to jumping on and off buses at will. I have no idea where he is going but at least it passes some time for him. He has no problem with remembering his way around at all and I still ask him for directions to places. I expect Ron is the same.

We too have a dog (clue in my user name!) and it is very interesting to see her reaction to Peter now. She refuses to obey any of his commands and is visibly anxious around him. Very recently she has started to refuse to go for walks with him in the evening. This was always a routine for them but she now actually growls at him if he gets her lead out. Very out of character for her as such a softie and will walk with anyone who has the time. I believe she is picking up his jumbled messages. Although he says the right words, the tone and timing is wrong and the 2 way communication has gone.

Thinking of you this week. Let us know how you get on.

 

[annesharlie]

Hi all

Thank you for responding to my posting. It really does help to know there are others going through similar - here in our small community I do feel isolated in this.
Westie, I feel so much for you, the change in Peter's character must be apalling, I felt sick when I read that even the family dog is wary of him. Take every, every bit of help that's offered.

I think they are getting wiser with the UBC assessment, they seperate the couples while the cognitive testing is happening, I think it was just too upsetting for the watching spouse. Indeed, I see Ron's score has worsened after just two months, and he says he didn't do very well. I was kind and said that the tests are nasty and specially designed to find your weak spots - he did say he felt like a dunce. Awful. The one thing he recalled later was having to say the months in reverse order and he couldn't get past December.

While he was doing these tests administered by a registrar, I had a good long time with the chief Dr there ( I know I can't put his name in, or the moderators will censor me!) It was good that he heard my story - as of course, Ron has a very compromised understanding of what is happening to him and in fact feels he's much better of late since he's loosened the straps on his CPAP machine!! My biggest concern is that he's becoming non-verbal, and I do hear with the FTD they do quite often become mute. It seems that R fits in some ways into FTD and in other ways into the Alz catagory - and that really only time will tell which direction he goes. A spinal tap has been ordered, for which we'll have to chip up $1000 as the particular analysis has to be sent to the states. Seems a costly lab test! So the Dr will assess all the testing done by the underling and himself and make reccomendations re drugs. Of course my biggest questions regarding how long will this take, and regarding speed of progression, couldn't really be answered - they will have a better idea after the next assesssment in about 8 months. He's probably to go for neuro psych analysis too, not that long from now.

So now it seems it's back home to cope as best I can. Hooray, R heads to Oregon with his mom and sister today and I have 5 days of looking after only myself and Matt! After that we'll be truly in that stage of the initial flurry being over, and the reality settling in. What will keep me sane is those few close friends who will stick with me - many other "friends" haven't even phoned, or phoned once initially and I feel have now forgotten us. I also do so much appreciate all of you angels who are so loving and caring under such difficult circumstances- thanks!
A

 

[jackie1]

I just thought I'd say hi.
I don't really have anything else to add just wanted to let you know that you aren't alone, not that, that's much help.
I'm glad that you have a group of supportive friends, their what keep me sane and laughing

 

[Amy]

Hiya Mary-Anne

I am amazed at some of the people who post on here - they are so up beat and cheerful.

Dont be fooled - I am sure that they have their bad days and patches too!!
I cannot imagine the pain of those of you coping with a partner with dementia; I know that the only way that I have been able to deal with mum's illness has been not to look back, to try not to remember, just to accept where she is at any moment in time. I cannot make her well, I cannot change the course of the illness, all I can do is try to be there with her, hopefully letting her know that she is loved.
Thinking of you all - great respect for you all.
Love Helen

 

[graham]

Hi Annesharlie

My Dad died in April after 7 years of Alzheimers

By the time we got to the funeral the man the service was about was ancient history - it had been about 4 years since any of us had had a sensible conversation with him

The first changes are the most painful though - especially as they are aware of themselves altering and youre watching helplessly

But only last night I was talking with my sister (who had Dad living with her for the last 4 months of his life) and she was saying she would have him back tomorrow - even with the hell of the disease

We had got to the point with him that even tho the ILLNESS was a burden he was happy within himself and altho he had no quality of life and he wasn't the Dad we knew we were still able to give affection and jokes and get them back and he was still DAD on some level

I think what I'm trying to say is that in the blackest times remember that if Ron's illness pans out similar to my Dad's in among all the nightmares you will still have plenty of fun and affection and love ahead of you too



Graham