I want my patience back

[Helen33]

I seem to have very little patience this week. Alan is definitely picking up on the vibes. I just seem to need to switch off whenever I can. Usually I can cope with the constant demands (I don't mean the demands that dementia bring), I mean demands generally. I have a sister with Downs Syndrome and I am responsible for making sure that her life is o.k. It has been far from ok with changes in the system of her care and I have been having to sort out loads of things with regard to that. It has meant challenging systems and people and trying my utmost to bring about positive change. My sister was suffering and rather than them trying to understand that she was suffering because of their lack of care and understanding, they were wanting to drug her on anti-psychotic medication (and succeeded until I found out). I have just about managed to change things round and my sister is now happy and cared for properly again but there are still a few miles to travel in order for me to let go. One of the good things that has come out of it is that the staff have had to undergo specific training in understanding someone who cannot express their needs clearly by language.

This is only one of the extra things - and all the time I am having to provide excellent care for my husband. It is only when I feel like I do this week that I realise just how amazing it is that Alan gets as good as he does from me. This week his care from me has been rather poor. I have not been able to give him anywhere near the attention that I usually give and my face has shown anguish, stress and annoyance at any little extra thing that needs sorting. Today he went out with the sitter and he took his key off his key chain I have no idea why he did that (I don't suppose he has any idea why either) but it meant that when they came back they couldn't get in because I was out shopping They were wet through because they'd been fishing with nets and jam jars (I will post pictures on Sticky Pics later when the sitter sends me the photos).

I truly apologise for such a long post but it has helped to just pour it all out. I have been holding it all in all week.

Love

 

[Canadian Joanne]

Helen,
You have done a remarkable job. Patience is a sorely needed virtue and you have displayed an abundance of it. Please don't beat yourself up because you're not perfect. You've done so well.

 

[gigi]

Hello Helen..

Empathy by the bucketful coming your way.....

The demands of dementia creep up on us so slowly that we don't realise how stressed we are..until the "extras" come along.

Being responsible for your sister is another responsibility. I didn't realise you had that to deal with too...

I'm sure Eric picks up on my moods too...if I'm sitting quietly cogitating he'll often ask if I'm ok..and if he's upset me..and if I stil love him. So even "switching off" can have its disadvantages.

Time for a break.... Did the SW ever get back to you about your respite?

Love gigi xx

 

[sad nell]

thinking about you helen, much better to let it out, you have done so well to sort out your sisters needs on top of alans needs, no wonder you are feeling a bit burnt out, great you got them to stop the anti phsycotics they can have such bad side effects, must rush doing stock take and keep oounting things twice . cannot concentrate today, love to you both and dont forget the whale photos. pam

 

[Grannie G]

Dear Helen

I truly apologise for such a long post but it has helped to just pour it all out. I have been holding it all in all week.

Please don`t feel the need to apologize for a long post, the fact it has helped to post speaks for itself.
And never feel the need to hold something to yourself `all week`, when you need to off load.

You have given us a lot of fun and pleasure with your wonderful photos of Alan and your garden. But no-one could know the sorrow and frustration hidden behind the joy unless you were prepared to share it.

You are the first to offer support Helen. Please allow yourself to receive it.

Love xx

 

[Helen33]

Thank you Joanne and Gigi

Alan told me he loved me today after he saw my expression of stress when I got home to discover they had been locked out. It was as if my day had suddenly changed from a determined effort to stay calm and in control to "oh God I can't cope with this".

Gigi, sorting out my sister's affairs has been such a lengthy process. It still is but I think we've turned a corner. I have had to find within myself commitment, time, knowledge, determination, patience, and trying always to be assertive and not aggressive when things are clearly not right. It is so hard when there is no support. Fortunately, it didn't take long before those higher up the chain completely understood things from my perspective which enabled me to continue the struggle.

With regard to the respite - believe it or not I was beginning to think that I didn't really need it The SW was supposed to ring me on Tuesday, she didn't so I rang the office. They said she would ring me Wednesday, she didn't so I rang the office again. They said she had to take emergency leave and she would ring me tomorrow. I could have asked for someone else to deal with it but I cannot be bothered. I know you will know what I mean when I say "I need the space to be able to deal with it". At the moment it is a hassle I could well do without. I am sure I will be better by tomorrow. I will have finished work for the week because I try to keep Fridays free. It doesn't always happen but it will this week because I am having a new garden fence fitted They assure me it will only take a day. Next week I only have one meeting with regard to my sister and that will take place at my house as I have told them I cannot leave my husband unattended. It will be the kind of meeting that will have some positives and some very challenging bits for the manageress (she really is not very good and not very bright).

Why do I feel so guilty for letting all this out. I am not used to talking about myself. TP is the only place that I talk about "me". My job is always about others. I think TP is a marvellous support structure

Love

 

[jenniferpa]

Why do I feel so guilty for letting all this out. I am not used to talking about myself. TP is the only place that I talk about "me". My job is always about others. I think TP is a marvellous support structure

You don't need us to tell you that's why. "Who heals the healer?" - you spend all your time supporting and taking care of other people so having one place where you don't have to do it (and can walk away from if you need to) must be a real relief.

Love

 

[Helen33]

Dear Sylvia

[QUOTEBut no-one could know the sorrow and frustration hidden behind the joy ][/QUOTE]

It seems hard for me to believe that life is sometimes like it is in those pictures and videos at the moment. Although at the same time I know I just need a little space and I can facilitate some light-heartedness. I am glad that I took them because tonight, when I get a moment, I am going to view them again so that I can bask in them. I am also going to post some lovely pictures of Alan with his sitter fishing with nets and jam jars. At least Alan has had respite from me today and he will have another sitter tonight whilst I work. He deserves respite from me at the moment.

Love

 

[Annoula]

dear Helen,

i too didn't know you care for your sister also.
but i admit you really made me feel proud. in the middle of all this you managed to become a winner!
maybe a tired winner but still a winner!

i hope you feel better soon.
many hugs!

 

[lesmisralbles]

Dear Helen

Sending you a big HUG XX

Barb & Ron XX

 

[PatsyM]

Demanding

Hi Helen.

I really feel for you as you have 2 crossed to bare. I wrote a thread this afternoon saying how I felt and how I was at screeming point with the demands and made an error and it did not post. The thin is that I felt much better just writing it down, I wish you all the strength you need. Take care. Patsy m

 

[Sam Iam]

Helen,
when we are down you are always one of the first to post comfort and hugs, you are such a lovely person xx


You are brilliant for standing your ground on your sisters behalf, the powers that be think medication is the answer to all in LD.

Helen this time will pass and you will be left with satisfaction of seeing your sister flourish as things improve for her.

Alan is recieving excellent care from you Helen, you cant be perfect 100% of the time but you are 99% and that is what counts

 

[Helen33]

A big thank you to Anna, Barb and Ron, Patsy m and Sam Iam, Jennifer and Sylvia, Pam, Joanne

Your kind words and belief in me have really helped me - thank you so much. I feel better for having been able to tell you all how I am at the moment and it is a big relief. I have now finished work, the sitter has gone, Alan has had a good time and is now putting his litter of dogs to bed and I am sighing a sigh of relief. It feels like the hardest part of the week is over and I can now just concentrate on getting the garden fence replaced tomorrow and caring for Alan.

Oh and I contacted the PR Dept. of Crossroads and asked them if they wanted me to write and article for their newsletter (with photographs) of the therapeutic effects of the sitting service on my husband.

Love

 

[sad nell]

How are you helen , you have been on my mind all day, i had a sauna today and who popped in my mind , you. hope you are okay and yes i have often thought that Trev needs some respite from me also but why not. in a normal life we mix with others and not together 24/7. because our loved ones have AD does not mean they should not need to have some time with others company.with out us feeling guilty. hope you can relax tonight and please feel able to share your worries when you need, you help us all so let us help you. Pam

 

[gigi]

Oh and I contacted the PR Dept. of Crossroads and asked them if they wanted me to write and article for their newsletter (with photographs) of the therapeutic effects of the sitting service on my husband.

What a good idea...Helen..you have so much to give to others..and continue to do that ..as well as looking after Alan..

Hope you can relax tonight and enjoy the next few days...

Love gigi xx

 

[Helen33]

Hello Pam

Our posts have just crossed I think. A sauna - that sounds nice I am going to relax tonight (in fact I've already started). I can actually feel the week just slipping away and the stress going with it. When I envisage tomorrow, it feels as though it is very manageable.

How is Trev? AND how are you after your relaxing sauna?

love

 

[Helen33]

Thank you Gigi.

love

 

[Bookworm]

A very big thank you

Helen - down as you are today - something shone through in your post to me & you gave me at a distance a lovely gift - this is what happened - I flew out of the house to see my husband conduct his small orchestra at a small music festival - not much in that you'd say - it has not been one of those really horrid days - pretty mediocre - didn't lose my rag - but vagueness everywhere, mishearing all sorts of things, seeking to clarify things that should not be cloudy, forgetting things - maybe just a tiny bit of real communication at times - but so poignant - trying to grasp at activities that worked in the past & bring them back to life.....you know - saying he'd do something - making plans - that really are unlikely to happen.

So - when I arrived I'd only missed the first bar.....I got some photos - the adjudicator said the loveliest things and to see him come home with the cup after just 15 mins playing - they were always going to get the cup as they were the only ones in their class!

It was the fishing expedition you talked of, the memories you must keep on creating....{I had not planned to go - I was going to have "me" time}....I really wouldn't have gone but for you Helen & I would have been so very sorry if I hadn't......

Thank You & I hope you feel buoyed up by the messages from everyone tonight

 

[Helen33]

Hello Sue

Oh I do feel very buoyed up - I am always amazed at the therapeutic effects of TP on myself. I tell everyone at the carers support group about it and I took in a load of leaflets about TP for them as there seem to be new people attending each time.

So - when I arrived I'd only missed the first bar.....I got some photos - the adjudicator said the loveliest things and to see him come home with the cup after just 15 mins playing

This is wonderful Sue (and you got photographs) Any chance of seeing them on Sticky Pics? These times are so precious aren't they. It's like celebrating the life that is still there and which would have just been seen as routine at one time.

Thank you for sharing Sue and for your encouragement

Love

 

[Margarita]

I say congratulation on achieving so much so far for your sister in her care needs well done.

Gigi, sorting out my sister's affairs has been such a lengthy process. It still is but I think we've turned a corner. I have had to find within myself commitment, time, knowledge, determination, patience, and trying always to be assertive and not aggressive when things are clearly not right. It is so hard when there is no support. Fortunately, it didn't take long before those higher up the chain completely understood things from my perspective which enabled me to continue the struggle.

With that positive mental attitude I am sure your turn more corner with your sister care .

But never forget like I use to while trying also to get the right care for my brother , while balancing mum needs also .

We are not Superwoman Our patience does run low , so does emotions.


Why not get another set of Keys done to your house , give it to Sitter Who give you the Key back , before she leaves ?