Ups & Downs

[carolr]

Good morning everyone, I feel like I am on a roller coaster and cant get off and I dont even like the things. As you know we have found my Dad a lovely nursing home and are currently waiting for a bed so last Friday we were up beat and felt like we had something to look forward to, getting Dad out of the assesment unit and settled. The home is comfy and caring and more importantly there is laughter and a good feeling about the place. I had to go away for the weekend to a family wedding and on the Sunday I got a text from my mum asking what time I would be home, oh god I could just tell from six little words that something was wrong. Dad had pushed another resident over hurting them and had also escaped from the unit and had to be brought back which resulted in one of the nurses being injured. My poor Mum was all alone with this I should never have gone to the wedding.

Monday saw me home again and able to pick my Mums spirits up and get her to accept that its not Dad doing these horrible things its the AZ. Tuesday we had a meeting with the consultant who finally agreed to Dad getting his Aricept back but also telling us that in addition to the AZ Dad also has Vascular Dementia so now we have a whole new lot of information to find out about.

Visits with Dad have been ok this week we are lucky that he does still remember us both and even called my Mum by her name on Wed so we left happy for a change, we visit every day and can talk to many of the other residents 2 one lady in particular is such a sweetheart and always comes to hold my hand while we are there I have not seen a visitor for this lady in all the weeks that we have been going.

Mum is usualy a little upset when we leave Dad so I stay for an hour with her, I tell her about the posts on here and they really help her I wish I had found the site years ago. My problems start when I leave Mum and go home to my family I usually cry all the way home cos I need to get it our of my system. My partner and my boys are super and I love them to bits but they dont understand AZ and make comments about Dad that I cant deal with, I have found that it is better if I dont tell them 2 much and keep the peace. Its very hard for teenagers to understand AZ and to be fair they never really knew my Dad without it, so they tend to judge him saying things like well he has always been agressive comments like that make me jump to his defence so its best if I keep things to myself.

Its so important for me to have this site to moan on, thank you so much and im sorry for going on so long.

 

[lovdn2]

Its so important for me to have this site to moan on, thank you so much and im sorry for going on so long.

That's exactly how I feel, only on here can we receive the understanding of others who are on the same roller coaster..................none of us like it, but we have no choice but to ride it to the very end.

Your boys may only remember your dad as aggressive but have you ever told them what he was like before the illness struck him?

That might help them understand why their remarks hurt you so much and they will have a better understanding of your situation.

Teenagers are very inward looking, they do tend to see the world as revolving around them, we all do at that age to a degree...........I remember being like that for a while, not nice, but a natural stage in becoming an adult.

You and your mum have each other and you seem a very caring daughter, I'm sure your mum is very proud of you.

Don't put yourself down about crying, I do the same, more and more often lately as mum gets more frail, it is the best way to let some of the grief and hurt out.

Take care now

xx

 

[BeckyJan]

I really do not think you have 'gone on too long' - it is good to get your feelings out and TP is a good way of doing it.

I am so sorry to hear about the incident with your Dad, but it does not matter that you were not immediately on hand - that is what the NH staff are there for and you are still there to support your Mum, which you obviously do very well indeed.

The mixed dementia diagnosis is quite common. They tell me that is what my husband has - it makes no difference to me about the diagnosis really as the outlook is still similar - slow deterioration until the medication becomes ineffective and then I guess a quick decline. That sounds so morbid but it is what I expect. In the meantime I make the best of every good moment.

For your teenagers you may find the Alz Soc has some suitable factsheets - it may help them to understand the illness.

Keep your chin up and take care of yourself. Best wishes Beckyjan

 

[Grannie G]

Dear Carol,

First of all, let me assure you you can `go on` for as long and as often as you need. This is what TP is here for.

You and your mum are the ones who know your dad the best. And you and your mum feel the most love and loyalty towards him. This is why it hurts when your sons don`t appear as upset as you are.

The ones who are closest are the ones most affected. And the ones who are closest have the most understanding of Alzheimers and Vascular Dementia.

That`s why TP is the best, to off load to. We are all in the same boat, close family carers.

If your boys upset you with insensitive comments, just remind them they are talking about your father, and if they haven`t got anything good to say, it would help you if they kept their opinions to themselves.

Take care

Love xx

 

[carolr]

Thanks for your comments they always help. lovdn2 I do try to tell the boys what grandad was like when I was small how he worked so hard and played proff Rugby league. How he used to throw me up in the air and sit me on his shoulders on the beach, how proud I was and still am to be his daughter. Dad had a wicked sense of humour with his one liners that had us falling about laughing very very occasionally I can see the twinkle in his eye that used to say watch out he is going to cheat at dominos or say something to make us laugh. Those memories are a comfort to me but also heatbreaking to remember does anyone understand that? When I remember him like that it breaks my heart, much easier to take comfort in the small triumphs that he has now like saying mums name and looking so smart as always.

I still have him here and will enjoy every moment that I can get with him. I take the boys to see him but not regularly he does know that they are his family but does not remember thier names, my eldest was so upset that last time he went but bless him he chatted away in the unit then broke his heart outside. My youngest son is a trigger for Dad has been for a few years there is no explanation for this and my son deals with it and leaves when Dad gets aggressive with him.

As a parent I need to keep my boys happy but unfortunately life is unfair and children need to learn this too. I will keep my grief from them that would upset them even more but I will not hide Dad's illness they must learn to deal with it.

 

[lovdn2]

Those memories are a comfort to me but also heatbreaking to remember does anyone understand that? When I remember him like that it breaks my heart, much easier to take comfort in the small triumphs that he has now like saying mums name and looking so smart as always.

Understand completely, that is why I try to live one day at a time looking back is incredibly painful................as for the future, who knows what that holds?

You seem to be doing all the right things and if your sons can't be kind about him, maybe as Sylvia says, they should keep their opinions to themselves.

In time, they may well be more understanding.

 

[Taffy]

Dear Carol
Sorry that you and your mum are having to go through so much. I think it is important to maintain some normality in your family relationship you can't completely put your life on hold.( If, my family were to read this they would say to me practise what you preach.) There is no way of predicting what may happen. Teenages can be selfish and inconsiderate at times, and I echo Sylvia's advice about letting them know, you don't appreciate their attitude. Your mum is very lucky to have your support, this indeed would be very hard on her, and also, hard on you. I know what you mean about the other residents one lady where my mum is, asks if I would be her visitor as she doesn't get any and it's not fair. If she does or not I don't know, but, I visit every second day now and have never seen anyone. I always bring mum sweets she loves to share them about and I give this other lady sweets also, she is so grateful. I did make sure she wasn't diabetic. I hope things go well with your dad. Take Care. Taffy.

 

[carolr]

Old heads on young shoulders? Let them be young and carefree whilst they can yes they are thoughtless and lazy and sometimes unkind but for the most part they keep me sane. After all the sadness surounding Dads illness and the guilt that goes with it I end up which such deep thoughts about life the why me why mum why dad then I get home and its whats for tea where is this where is that or some petty squabble they have had that seems so important to them and I dont have time for being down. This is where I am luckier than some cos I can go hone to a busy house, my poor mum has too much time alone to think

 

[Skye]

my eldest was so upset that last time he went but bless him he chatted away in the unit then broke his heart outside. My youngest son is a trigger for Dad has been for a few years there is no explanation for this and my son deals with it and leaves when Dad gets aggressive with him.

As a parent I need to keep my boys happy but unfortunately life is unfair and children need to learn this too. I will keep my grief from them that would upset them even more but I will not hide Dad's illness they must learn to deal with it.

Carol, it sounds as if you have nothing to worry about with your sons. They are both dealing with visiting brilliantly.

Perhaps if you keep praising them for being so sensitive, it might discourage the comments?

And I don't think you need always to hide your grief from them. Let them know that you are upset at your dad's illness, and you hate to hear them saying nasty things about them. It sounds as if they are mature enough to respond.

Love,

 

[carolr]

Your right Skye I do tend to underestimate them guess I dont want them to grow up eh gosh my eldest goes to university next year (fingers crossed) and the youngest the year after!

I just rang the hospital Dad had a good nights sleep great news that is probaby cos we pointed out that his room was cold Dad hates the cold so they gave him more blankets and turned his heater up. I am looking forward to seeing him tonight and Mum is going to try and drive for the first time since she had the pot off her arm (am not looking forward to that as much). Watch out on the news at 10 for a granny and daughter being pulled out of a ditch around about 8 pm this evening ha ha.

 

[Skye]

Watch out on the news at 10 for a granny and daughter being pulled out of a ditch around about 8 pm this evening ha ha.

Hope not!

Good news that your dad is more settled, let's hope the visit goes well.

Love,

 

[Margarita]

but they dont understand AZ and make comments about Dad that I cant deal with,

Now that does reassure me , I'm not alone , because that Just what my teenagers use to say to me .

The only thing I found that help me to say to them when they said that , was Just wait till it happen to me if I got AZ , then and only then your really understand what I am feeling .

They minds are to young , I don't feel they selfish , because they going though they own emotion in seeing us crying , upset , they grieving not only for they grandparent but for us , they mother or farther

Over the time living with AZ , they found out that I am not alone in feeling the way I am feeling .

( 5 years & only last few weeks are they understanding that , because of video on the AZ main page & TV programs )

They now 4 adult children they all have deal with it in they own way , still don't like seeing me crying , they come to terms with that I'll never deal with it in the way way they like me to , so we talk more now they don't worry so much when I cry , because they know I feel better after the tears roll down out of the blue .