I just need to share how I'm feeling

[Helen33]

Crossroads rang to say that they have someone for Monday mornings and Thursday afternoons and that they will gradually increase this over the month to our full allowance.

It is only now that I am appreciating how difficult this process is. I am battling with it in my head because I can't tell whether it will be a help or a hindrance. It is such a big change having someone else to consider. I don't want anyone to misunderstand and think I won't accept what's being offered, I just want to speak out how I am really finding the process. I expected to feel relieved and full of joy but it's not the case. I suppose I will have to actually have the 'experience' before I know the effects - good or ill. I hope I haven't acted too hastily! I think it's because when we had that virus things were dire and bleak but now things have gone back to 'our normal'. We both like 'our normal' and now it is going to be disrupted to introduce another normal!

Love

 

[foxhound]

I know exactly where you are coming from. I would be quite as trepidant as you are.

I have no direct experience of Crossroads, because our local branch has a waiting list the length of a very very long thing! I am also very unconvinced that when we do grind our way to the top the help offered will really "work" for us.

But...overall, the Crossroads service does seem to be very well regarded, and as the disease progresses, more help will almost certainly be a blessing.

Soyez-brave, stick with the bureaucratic grind, and see how things work out. Remember, if it really doesn't do any good, you can always tell 'em to go away again!!

 

[Grannie G]

Dear Helen

I know what you mean.

From what you have said Alan still seems well able to hold his own.
I know you are two healthy people and unlikely to be ill again for a good while yet, but when you both were ill, he was under too much pressure to manage and it had an impact on you. Illness is impossible to predict.

You are under stress when you have to work in case Alan needs attention. Having someone in would reduce your stress considerably, on the work front.

Be thankful Alan is prepared to go along with it. From what I`ve heard of Crossroads they do try very hard to `match` people and Alan might find he has a new friend.

You do not have to accept as much as has been offered. To stay with the twice a week for the start would be fine. If in the future you find you need more, it will be there for you.

It`s possible I have left it too late, allowing Dhiren to call the shots, but previously I know he would have walked out. Although I know there will be difficulties, he is not quite as `anti` and I have to give it a try otherwise I`m facing a very bleak future.

I do hope it will be all right for both of you Helen.

Love xx

 

[Skye]

Dear Helen

I understand how you are feeling, I was exactly the same. I enjoyed being with John (still do!), but for my own sanity I had to get out on my own for a while, and I didn't feel safe leaving him. John liked nothing better than to go for a walk. Fine if I was at home and could go with him, or at least be easily reached. Not so fine if I worried all the time I was out about where he was!

You may not feel that Alan is at this stage yet, but no-one knows how this disease progresses in any one person, so next week/month you may start to feel anxious about leaving him.

As Sylvia says, you don't have to accept all the hours they offer. Start with the two sessions (that's all I ever had, and it was enough for me), and if you are happy with that, just say so. You can always ask for more later on.

And if you or Alan don't get on with the carer, ring the manager and ask for a change. Don't forget, you are giving them work, even though someone else is paying for it. They'd go out of business if people weren't satisfied.

I hope it all goes well,

Love,

 

[Brucie]

Hi Helen

I think it is a case of, your having been totally responsible for a person's care, when new helpers arrive on the scene, you may feel you have additional responsibility, not less.

This will be so for the initial time, because you may feel responsibility to check that what is being given is appropriate, and of a standard that you feel is right. You may not believe it will work, no matter how much you hope. You may fear to be too optimistic.

There will also be a feeling of - "great! But..... what if I get used to help and suddenly it is taken away again...? Will I manage to cope again?"

Also, helpers may change over time as different people get swapped in. What if the first ones are good, but later ones are not?

You may feel the additional responsiblity of needing to maintain a watch to ensure continuity of good help.

So much easier when it is just you?

Well, in some respects yes, perhaps, but in others, definitely no.

Just take it slowly....... change is always difficult.

Crossroads has a very good reputation.

 

[Norman]

Hi Helem
crossroads are wonderful.My experience!
We had them for the time of Peg's AD.
I think it is is a matter of realising that you do need help,how much is for you to decide,but you may need more later than you do now.
I found it very difficult to admit that I needed help,but i'm glad I did.
Norman

 

[Helen33]

Thank you

Thank you for your support. It only took a trip to the market today,leaving Alan for about 3/4 hr. to drum in some reality. When I got in Alan was quite animated about telling me about some message on the radio to do with us. I couldn't understand it but he thought they were sending a message to us I think. This doesn't happen if I'm with him (or someone is with him).

you may feel you have additional responsibility, not less

Exactly. This is definitely hitting the nail on the head.

I will go with the flow as they say.

Love

 

[jackie1]

Hello,

Crossroads come in on a Monday evening so that the boys and I can go out free from stress and worry. The carers that we have had are wonderful and John is very comfortable with them and even seems to look forward to their arriving.

But I really do know what you mean about the hinderence, making sure that I have everything as it should be before she arrives, preparing something for John's tea and then trying to find something that can be done within 3 hours that doesn't bankrupt us is stressful.

BUT once we are out all that is forgotten.

I hope it works out well for you Helen

Love
Jackie
xx

 

[bclark]

crossroads

dear helen, i had crossroads for one visit a week, best thing i ever did, she became a freind, she went out of away help in so many ways she was very flexible willing to change her duties as the AZ went into decline, as alan is in EMI unit now, we dont have crossroads at the moment.i would say try, and see they gave me a bit of my life back. bclark

 

[christine_batch]

Dear Helen,

Crossroads are really brilliant. When Peter was first given x number of hours per week, I did feel redundant.

What was so important, Peter built up a really lovely bond with his Carer and she was a brilliant supportive friend to me.

When Peter declined rapidly and the hours were increased I was so relieve that Peter knew the couple of Carers who came in.

I could trust them completely to do things the way I had for Peter and what was so important Peter was happy .

One day, Peter went out with Carer shopping and I was on the settee resting (doing as I was told for once) and Peter came in with a bunch of beautiful fowers. No they were not for me they were for the Carer.

So take each day as it comes. I did make a list of things Peter liked and disliked for the Carer.

Best wishes
Christine

 

[gigi]

Hello Helen,

Sorry it's taken so long to reply to your post...

Have been with my mum sorting out a "Lifeline" system..so if she has a fall..or a problem..she can contact a central service and help will arrive!
I'm also coming down with a cold..or something....

Any stranger coming into the house is an intrusion..I have no personal experience of Crossroads...but our "regular" sitter is a gem...and has become so through her own efforts.

If you can help Alan to accept at this early stage that the "someone" coming in is helping you..and therefore helping him..then you're half way there.

Eric still will maintain that he doesn't need his "sitter"..he could come out with me...but I know he needs this service...I have to be one step ahead all the time..and once she's here he treats her like one of the family...

having someone else to consider

...Why are you thinking that you now have someone else to consider?

Their role is to take some of the burden from you...Helen..this is the first part of a long journey..I know how you feel..

But when I look back to 2 years ago I'm so thankful I accepted the sitting service..I've worked with it and they have worked with me.

You'll be fine..both of you...

love gigi xx

 

[Helen33]

Hi Everyone

..this is the first part of a long journey..I know how you feel.

You are right - and it is comforting to know that others have trod this path before me and have gained real support.

I had a phone call this afternoon from the Carers Federation and the man, M, asked me how I was and whether I needed anything. I could have fallen from my seat. I told him I was in the process of having a sitting service and wasn't at all sure what I needed other than to have the 'experience(s)' with the sitters and myself and Alan. He was really lovely and arranged to ring me back in the next 2 or 3 weeks as a follow up to see where I am then. I told him that his call really made me feel valued and was support in itself - just that someone out there knew that I existed as a carer and might have needs!!!

Then tonight the Fire Service rang to ask if they could come and instal smoke alarms and do a fire assessment. That all went well and quickly.

Alan's gone out with his son and I am resting now and preparing myself for Alan's visit to the Eye Clinic tomorrow to see the surgeon who operated on his eye. We haven't seen him since the operation as the follow up treatment was with Eye Casualty. Hopefully he'll be able to either come off the drops altogether or they'll be reduced so that I can at least get out for a swim.

Love

 

[connie]

Dear Helen, so glad you are feeling a little more positive tonight.

I told him that his call really made me feel valued and was support in itself - just that someone out there knew that I existed as a carer and might have needs!!!

"might have needs!!!" speaks volumes. Great that you are getting this much feedback.

Then tonight the Fire Service rang to ask if they could come and instal smoke alarms and do a fire assessment. That all went well and quickly.

Just don't tell Maggie (Margarita). She has a thing about men in uniform. Don't we all?

 

[heartbroken]

GOOD LUCK for tomorrow Helen
hope Alan can come of some of the drops it must be hard to put drops in every half hour you must be watching the clock all the time.
I will be thinking of you

 

[Lanie]

Dear Helen

I have a family member who works for Crossroads in our area and from what she tells me they are very good. She was very impressed by them and the level of care they provide.

Hope it all goes well!

Lanie

 

[heartbroken]

Good Luck

I will be thinking of you and Alan tomorrow

Hope it all goes well with crossroads and Alan is happy

 

[Helen33]

Thanks Heartbroken

It's going to be a milestone tomorrow. The last couple of days have made me realise how I need some help. It's when the sundowning thing happens that makes life so difficult when I have to work at home. I call it sundowning but eventually I will find a proper label for whatever it is that happens. Alan is having a bad time of it tonight.

Love

 

[Grannie G]

Hello Helen

It sounds as if Alan is sundowning. It doesn`t have to be about `going home`, it can be a change in demeanour, a restlessness. Is this what happens with Alan?

I do wish you well for tomorrow. I really hope it works out, for both of you. And if it does, I will be green with envy.

I hope Alan will accept, and you will relax.

Love xx

 

[Helen33]

Hi Sylvia

sounds as if Alan is sundowning. It doesn`t have to be about `going home`, it can be a change in demeanour, a restlessness. Is this what happens with Alan?

Yes it is definitely a change in demeanour, restlessness, anxiety, fear, agitation and it is like being with a different person. There is a visible difference. However, he never talks about going home.

We were introduced to L from Crossroads today and she seems lovely and I was very happy. Alan was not very happy about it but L was not stressed at all about his lack of appreciation. I have never seen Alan like he was with L this morning. He had that change of demeanour and was understanding it all in his own way which was difficult to understand. I think he thought he was going to be taken away and was not able to be reassured by me that nothing bad was going to happen; that this was his home and he was not going anywhere else.

I just said "he needs to have the experience in order to know it is safe. He doesn't understand words but, hopefully, he will understand the experience".

L seemed special in some way and I hope it works out for us. I cannot see why not. As soon as L left Alan was alright again.
I feel confident that he will come round and later on I said "that lady was nice wasn't she and he said "yes" and started talking about her in a positive manner".

Love

 

[gigi]

Hello Helen...

I'm glad the visit went well..(ish...).

I'm sure given time Alan will build a relationship..and be able to trust L.

As you have said..your attitude towards L is of vital importance too..if Alan knows that you are happy and positive he will feel more secure about the whole thing.

Love gigi xx