Hello

[J@ne]

I'm new here but I'm sure I'll be back frequently. My dad was recently diagnosed with AD. He's got moderate symptoms (according to the book I read anyway). He still knows us but is losing lots of memories and starting to struggle to put names and relationships and pictures of people together. He has brighter days when you can have conversations, and flat days when he's not really able to relate to us so well. The time before last when I saw him I don't think he remembered my name, but the last time I saw him he did and asked if it was me in a photo of him and me together that I'd taken over. He lives with my stepmother about 2 hours drive away. My sister and I are trying to go and give her as much respite as we can by going and staying for a few nights as often as possible so that she can get away and get some sleep (he's often up in the night and trails round the house after her and has to be out all the time putting an awful strain on her and her pocket I think).

Aside from watching my dad disappearing before my eyes and the hurt of his inability to remember my mother (I know it's the disease, not him, but it still hurts), I'm also anxious about the effect its going to have on us caring for him. It's going to be difficult and strained and living so far apart doesn't help communication. And because of this disease, the time we'll be together will now be focused on caring, and will be about letting my stepmother get away instead of being about being together and enjoying each other's company. In particular I worry that my stepmother struggles to ask for help from us - I keep saying "he's my dad" but I still think she feels guilty intruding on our lives and making demands. And I know she struggles with all kinds of feelings of guilt and frustration and doesn't find it easy talking about it all - I think that will come though. When she hears us saying the same things as she feels it kind of gives her permission to feel that way.

I think the hardest thing is how much his personality is changing. He's given up lots of things - from fear I think - but he was always a stubborn old sod and wouldn't be beaten by anything so it's hard to see. He's already become quite self centred for the most part which is a strain. And sort of flat a lot of the time although on a good day he still enjoys a silly giggle - like this weekend he was teasing me for drinking a bottle of water so I squirted some at him with a little more force than I intended so I splashed him - he thought that was hysterical!

And I can't bear to think how upsetting and frightening it must all be for him. And I'm scared about how long I can be patient and kind and how easy it will be as he fades further. We always used to get on like two cats in a bag! Now he's so vulnerable I manage to be more calm but how long for?

Anyway I've rambled on enough - just wanted to introduce myself really and I can't say I look forward to being here but you know what I mean I'm sure

 

[cris]

Hi Jane. I am sure you have read many postings here, and my first suggestion is to get in touch with yours and your stepmum local Alz. Society. They are a great source of information and could be a good start for advising your stepmum. I have never been one for having lots of photos around the house but we have a few and when my wife says I don't live here, where are am I ? I show her a picture of us and of our children. It's a long way to travel for yourself, and perhaps that's why your stepmum does not like to ask. The sufferer's world must be extremely frightening and from my wife's view I can see she must be putting an unimaginable amount of trust in me, that makes me proud and keeps me calm and patient. It takes a while to achieve some things with her, like dressing, washing, toilet, and I mean a while. I think you show understanding, and if you hang on to your patience ( changing the subject if things are not going as you would like often works - not always but sometimes) you will be doing your best. You'll know when to shut-up and just cuddle him.
best wishes cris

 

[Brucie]

Hello Jane and welcome to TP

your description of your situation is very clear and well put - you obviously have a way with words.

You might want to keep a diary, if you don't already, of how Dad is from day to day, as you are with him. I've found that really helpful in my journey, and it enables me to judge better the differences between one month and another, one year and another.

I also found that I noticed things more by putting on, additionally, the observer hat.

Good luck in all you do, and please let us know how things go - and post bhere as much as you need.

 

[Grannie G]

Dear Jane,

You seem to have developed a keen insight into AD very quickly. All you say has been experienced by so many carers and we can only play it by ear, on a daily basis, in the hope we are doing the best we can.

I understand your step-mother trying to brave it alone, I try not to intrude too much into our son`s life. To some extent, I feel it is my husband who has this condition, so my responsibility to bear the brunt. I keep my son well informed of any incidents, changes or medical appointments, and as he lives very near, he is always popping in, and I know he`ll be there if I need him. Other than that I know he has enough on his plate with a demanding job and 3 children, and I feel he should be able to give them the bulk of his time.

As you live such a distance, visits have to be planned, so they can`t be as spontaneous. Just do your best, as I`m sure you will, and give both your dad and step-mother as much support as you can.

Take care

 

[Noone]

Hi Jane. I too, introduced myself with the entire story of why Im here too, it really helps everyone understand where you are coming from, and the full story from the start, so you can continue to talk through different things in later posts.

Hopefully if you have time, you can read through other posts and see that the things you and family are experiencing are fairly common, and explainations from some wonderful people on this forum will help you realise you are doing the right things.

Its great for boosting your own self esteem, and knowing you are on the right path.

 

[blue sea]

Welcome to TP , Jane.
I'm sure you'll find this site a great source of support and help. I'll pick up just one point from your very sensitive and thoughtful post - about your worries for how you will cope in the future. From my own experience you just do! You respond to each new situation as it arises and deal with it to your best ability - that is all you can do. Your love for your dad will see you through. Yes it is heart breaking at times but you also discover unexpected pleasures and joys at small special moments. How wonderful that you have such a good relationship with your step mum. It makes such a difference when you support each other as a family. Find time to look after yourself too - enjoy your life as well as doing your best by your dad and continue to help your step mum get those bits of respite - it will make a huge difference to her.
Blue sea

 

[Skye]

Hi J@ne

Welcome to TP.

I know you're in a difficult position, because I'm a step-mum!

My husband John and I got married late, as we'd both been widowed. John has three sons, but they all had lives of their own by the time we married, so we didn't have a mother/son relationship.

I too find it difficult to ask for their help, although we get on well. They come and visit regularly (at least two of them do), but they don't offer respite, or help with caring, so in fact their visits often put extra pressure on me. Particularly if they say they'll do something, then don't.

I try not to say anything, because I don't want them to feel they're not welcome to see their father.

I'm not saying this to complain, I took on the caring role willingly. What I'm trying to say is, when you visit, try to make your visit helpful to your step-mum, and not just an extra strain in an already stressful life.

I'm sure you're doing this already, you mentioned giving her respite. But the more you can do to help her, even if she doesn't ask, the more she will welcome your visits, and the better the relationship for all three.

Good luck,

Love,

 

[J@ne]

Thanks everyone

I've been looking round and reading posts before introducing myself, and I knew you'd all be very kind and welcoming. Believe me, it's more helpful than I can say!

Skye you're absolutely right and yes, I try to help out as much as I can and do bits of cleaning or errands etc to take some of the pressure off. I think we all need to make some adjustments - I'm also very sensitive to intruding on my stepmother's privacy and trying to tread a line between being helpful but not marching callously through her home making her feel like I'm judging or taking over. It's very different to how it might have been if it was my mum it had also been my home. I'm a step mother myself and I've been through all kinds of stuff about moral authority and being like a mother but not a mother so perhaps that helps.

It's a shame your step sons don't seem to fully appreciate the burden you carry - I have to admit until the first time I spent a couple of nights with my dad by myself I didn't fully appreciate what my stepmother was dealing with. It sounds very much like you feel a lot more annoyed about them than you're happy to put into words, but I think you have the right to feel that - they obviously care or they wouldn't visit. Maybe they just don't understand at all what it's like. Same goes for you Grannie G - maybe have a conversation about how much they can do and let them decide what's too much? I've had conversations with my sister and step mum about what time I can get from work and how often I can get over.

Brucie the diary is an excellent idea - I did think about it - I used to write lots, and have kept diaries off and on since childhood. And wearing the observer hat does help - at least, I found out how unhelpful it is leaving it off sometimes! Dad got cross with me when I tried to help him put a DVD on and he wasn't able to explain to me what he wanted, so I flounced out. But I managed to let go of all the years of arguing before he followed me, and I remembered it was all much more scary for him than for me (I think one of the Alzheimers Society leaflets I read was in the back of my mind luckily) so when he later followed me I gave him a big reassuring smile (which is some achievement for me! My mother would have paid millions to see that happen!) I hope I can keep that up.

Cris - you're right about the cuddles. In a way that's a benefit of the disease! Because dad's verbal communication is diminishing and because he's so vulnerable now, I touch him much more than I ever did - hold his hand or put my arm round him. I've been trying to encourage my stepmother to get in touch with the local Alzheimers' group - I'm going to try to get some time off when they meet so she might be able to go. I also told her about this board and suggested even if she doesn't want to register at least reading some people's posts will help her for all the reasons you've all said here.

You've all been really supportive already. And I will be back with lots of questions and grumbles and I hope even with some helpful remarks for other people so thanks again.

 

[Grannie G]

Just Keep posting J@ne, there`s always someone here.

 

[Skye]

Glad we've helped, J@ne. It's helped me too, to see the other side of the picture.

Do try to get your step-mum to join, I'm sure it would help her too. It would be good for her to join the local AS group too. As well as meeting new people, they're a very good source of information, and a link to other services.

Love,