TIPPING POINT

[Grahamstown]

I’m quite worried about how I quickly I get angry at OH over the smallest thing. I know she doesn’t mean it but my base level of tolerance and patience is very reduced. It’s all the little things that add up and it only needs one push of that particular button and I lose it. Everyone says it’s understandable but it’s not helpful is it.?

I know what you mean because I have the same lack of tolerance for the dementia behaviour. I am trying to have solutions for some of them which helps but his worst weakness is with alcohol and I manage it pretty well most of the time but when I slip up and he evades my care, I go ballistic and I hate it. I just pick up and try again the next day because he doesn’t appear to remember and it’s me who suffers. With my best wishes to you.

 

[kindred]

Exactly - is it ever worth it? This is 'Care in the Community' - keep them in their homes - but at what cost to us???

Yes, care in the community. I do not think it is worth it, there is too much suffering. Know that is a harsh viewpoint, but have seen too much, experienced too much. Community equals us, desperate, prisoners in our homes. But what to do? Who will help?
Kindred'

 

[kindred]

Amazing. You folks are amazing. No matter where we all are with the caring journey be it just beginning, middle or last stages we all intimate with the needs of the people we care for. I went to our doctor today for a chat about how the dementia is affecting me but realistically he can do little, he can’t give me a magic pill to relieve my symptoms, just reminded me to keep the contacts I’ve got, keep as well as possible and I can visit for a chat any time. Even our chemist has a dementia friendly room now where I can off load. Handy.

I’m quite worried about how I quickly I get angry at OH over the smallest thing. I know she doesn’t mean it but my base level of tolerance and patience is very reduced. It’s all the little things that add up and it only needs one push of that particular button and I lose it. Everyone says it’s understandable but it’s not helpful is it.?

So know what you mean. I wish they had offered me a treat like flowers on a better day. On one of the hardest days of my life when OH had pushed me down the stairs, I was covered in bruises and other things ... the social worker said would I like a hot stone massage as a treat. Kindred.x

 

[maryjoan]

Today's Tipping Point......

After closing my genealogy shop 2 years ago, and doing no advertising whatsoever, over the last 6 weeks or so, I have had lots of enquiries and new projects to work on.

This has raised my spirits, self esteem, and given me joy ( as well as much needed money)

But I need to be able to do the work, quietly and with concentration and I am finding that difficult as OH keeps interrupting me all day long, and wanting to play scrabble. During the night he is keeping me awake, as he will not go to bed till about 2.00am, and then he is still up and down for the rest of the night.

I have tried to get him into the habit of letting me work in the mornings so I can spend the afternoons with him, but he doesn't seem to follow that.

I have also tried to find a small office near home to work from , but no success so far - I cannot travel as we have no car and a very rural bus service.

Is the answer for him to go to a Day Centre, supposing I could find one? I think it must be.

Am I entitled to be able to work, whilst caring 24 hrs a day with a PWD? I think I must be...

Thoughts, friends, please?

 

[maryjoan]

Just another thought....
Has anyone ever thought of leaving their PWD ( as long as they are happy and safe) overnight, and booking into a B & B to get a night's sleep?

 

[Phoebe2]

Just another thought....
Has anyone ever thought of leaving their PWD ( as long as they are happy and safe) overnight, and booking into a B & B to get a night's sleep?

Hello MaryJoan,
I have not only thought about this, I have for the last year been taking the occasional night away. it is always with trepidation but I see it as essential and not a luxury. My OH has Alz, diagnosed almost 18months but has shown symptoms for over 5 years. I have given up work, social life and sleep so he can live well with his dementia...and to be honest I am exhausted. With no family nearby and him too well for respite, there is no other way to protect my health and sanity.
If you are happy that your other half will be ok then please have that good nights sleep x

 

[AliceA]

Good luck, Mary, I do hope it works out. Do not give up hope. I had resigned myself to not finding any respite from 24/7.
I have been ill for a week but yesterday my pending file became overflowing so with some medication as a support I tackled it.

I have chased up Social Services for the needs assessment, I am not sure what advantage it is but it is just a warning shot that without public transport and no county services for day care I am wearing thin. (Not my body, weight has gone up!!) I know we would have to self fund but how long resources would last is a different matter. They know that too!

I then contacted a day club not dependent on county funding as I had no reply to my application. I thought the query they had made meant they could not cope. However the email had got stuck in the drafts box.
We have been offered a taster day in two weeks from now, they now have an extra driver.

I felt stunned after months of trying and finding obstacles all the way. All being well it could mean five hours a week, I will not be able to go far but five hours of switch off!!! So do keep trying.
People blandly say get day care, sitters, cleaners and mythical personal assistants, but it really does not work that easily.
So I do hope something slots into place for you. Xxx

I am hoping I have not lost the ability of going somewhere alone, I just never leave him.

 

[kindred]

Good luck, Mary, I do hope it works out. Do not give up hope. I had resigned myself to not finding any respite from 24/7.
I have been ill for a week but yesterday my pending file became overflowing so with some medication as a support I tackled it.

I have chased up Social Services for the needs assessment, I am not sure what advantage it is but it is just a warning shot that without public transport and no county services for day care I am wearing thin. (Not my body, weight has gone up!!) I know we would have to self fund but how long resources would last is a different matter. They know that too!

I then contacted a day club not dependent on county funding as I had no reply to my application. I thought the query they had made meant they could not cope. However the email had got stuck in the drafts box.
We have been offered a taster day in two weeks from now, they now have an extra driver.

I felt stunned after months of trying and finding obstacles all the way. All being well it could mean five hours a week, I will not be able to go far but five hours of switch off!!! So do keep trying.
People blandly say get day care, sitters, cleaners and mythical personal assistants, but it really does not work that easily.
So I do hope something slots into place for you. Xxx

I am hoping I have not lost the ability of going somewhere alone, I just never leave him.

Oh I am glad, Alice, I am glad. As for going somewhere alone, at first, I found it terrifying. I used to have to look around and count all the people who were alone and keep saying, alone is normal, alone is normal!!! Gxcxx

 

[marionq]

And I'm glad too @alice and for your idea of a break @maryjoan . Daycare and once a year respite have kept me ticking over for the last years. I got an offer of two weeks respite while John was in hospital recently and therefore couldn't accept it. Now he is out I wonder if he will ever be able to go back to daycare or respite. He is so weak all his core strength has gone. He is a dead weight! All 9 1/2 stone of him!

So it is important to get some kind of help while you can. I am in the process of rethinking our usual routines. Not sure what happens next at this stage but open to all ideas and suggestions. I do have physios coming out soon to look at the house and John and hope they will come up with something.

 

[maryjoan]

Good luck, Mary, I do hope it works out. Do not give up hope. I had resigned myself to not finding any respite from 24/7.
I have been ill for a week but yesterday my pending file became overflowing so with some medication as a support I tackled it.

I have chased up Social Services for the needs assessment, I am not sure what advantage it is but it is just a warning shot that without public transport and no county services for day care I am wearing thin. (Not my body, weight has gone up!!) I know we would have to self fund but how long resources would last is a different matter. They know that too!

I then contacted a day club not dependent on county funding as I had no reply to my application. I thought the query they had made meant they could not cope. However the email had got stuck in the drafts box.
We have been offered a taster day in two weeks from now, they now have an extra driver.

I felt stunned after months of trying and finding obstacles all the way. All being well it could mean five hours a week, I will not be able to go far but five hours of switch off!!! So do keep trying.
People blandly say get day care, sitters, cleaners and mythical personal assistants, but it really does not work that easily.
So I do hope something slots into place for you. Xxx

I am hoping I have not lost the ability of going somewhere alone, I just never leave him.

Oh I feel for you - do keep chasing - I think in this country there is a default of not making information easily available or help accessible - I think 'they' have an idea that 24/7 carers are usually too tired, and mentally exhausted to make the huge efforts required.

My daughter is looking at becoming a Personal Assistant - but she is not sure how to publicise what she wants to do to find clients...

 

[maryjoan]

Hello MaryJoan,
I have not only thought about this, I have for the last year been taking the occasional night away. it is always with trepidation but I see it as essential and not a luxury. My OH has Alz, diagnosed almost 18months but has shown symptoms for over 5 years. I have given up work, social life and sleep so he can live well with his dementia...and to be honest I am exhausted. With no family nearby and him too well for respite, there is no other way to protect my health and sanity.
If you are happy that your other half will be ok then please have that good nights sleep x

Oh Gosh Phoebe - you are in the same boat as me - my OH was diagnosed 2 years ago, and has physical ailments and life changing surgery... I thought my idea of a night away was really odd but to find someone it works for is wonderful - I really must think about this more....

 

[Grahamstown]

We have been offered a taster day in two weeks from now, they now have an extra driver.

I felt stunned after months of trying and finding obstacles all the way. All being well it could mean five hours a week, I will not be able to go far but five hours of switch off!!! So do keep trying.
People blandly say get day care, sitters, cleaners and mythical personal assistants, but it really does not work that easily.

I am so glad that you have made some progress in getting a small amount of respite and hope it works out well. What you say is quite right, it’s not that easy. I have managed to find a cleaner every other week, who will also watch him and make sure he eats his lunch when I leave him to go to my meeting. I made a decision to give up the committee in March at yesterday’s meeting. He was ok when I got back, he had been on his bed, and left a cold cup of coffee again. Hope you are feeling better today.

 

[AliceA]

Oh I am glad, Alice, I am glad. As for going somewhere alone, at first, I found it terrifying. I used to have to look around and count all the people who were alone and keep saying, alone is normal, alone is normal!!! Gxcxx

I thought of you yesterday, I remember when I first went out without pushing a pram in front of me, I felt naked! Xxx

 

[AliceA]

Oh I feel for you - do keep chasing - I think in this country there is a default of not making information easily available or help accessible - I think 'they' have an idea that 24/7 carers are usually too tired, and mentally exhausted to make the huge efforts required.

My daughter is looking at becoming a Personal Assistant - but she is not sure how to publicise what she wants to do to find clients...

Even findingding the SS telephone number was not straight forward.
It was not obvious on the Council page!
Last November I was told our cast was urgent, category 2 as catagory I was if I was in immediate danger.
I am not just spells of complete tiredness.
You are right about the mental exhaustion, I think younger people and non Carers do not realise just how tiring it is.

Good luck to your daughter. That is what I need, a personal assistant, my daughter talks as if they grow on trees.
I am sure your daughter could find work, she would need the checks in place. Then perhaps talk/advertise locally. Our county has a magazine for 50s plus. Word of mouth is often best. Wish her well from me. Xxx

 

[AliceA]

I am so glad that you have made some progress in getting a small amount of respite and hope it works out well. What you say is quite right, it’s not that easy. I have managed to find a cleaner every other week, who will also watch him and make sure he eats his lunch when I leave him to go to my meeting. I made a decision to give up the committee in March at yesterday’s meeting. He was ok when I got back, he had been on his bed, and left a cold cup of coffee again. Hope you are feeling better today.

Thank you, I am a bit better, I used the vacuum and had to sit down after!
Like you I have slowly given up on outside commitments, many we had shared.
When I heard that I may get five hours it seemed as good as a five month holiday. I was a bit curt when someone tried to tell me what to do with these precious hours!
I am still feeling a bit shell shocked, I have to remember it is a tester day, so fingers crossed.
I am glad that you can get out occasionally, my attempts at a cleaner failed because they offered unreasonable hours. To get someone over a lunch time is good.
Cold drinks are normal here too!
The sun is out here, I hope it will clear the frost so we can get a walk, we and the Rollator make three!
It will be strange walking at a normal pace!
xxx

 

[Grahamstown]

I was a bit curt when someone tried to tell me what to do with these precious hours!

Absolutely, those are your hours and you can sit do nothing or anything else that takes your fancy. I have developed an ‘um’ answer to all helpful comments now. I am the one who has to act on them and I just can’t. I have commented on the care home I visited elsewhere but the manager did say that the most experienced person would struggle to care 24/7. They have all the activities that would benefit him but are so exhausting for me to achieve!

 

[AliceA]

I try to convince myself I did 24/7 for the kids when they were very young, we had no family near. Later we used to take it in turns to have the children from the small road, of course I was much much younger and we had hopes the children would grow out of each phase.
I am sure the comment was meant kindly but as you say just nothing to do sounds good for starters.

We did walk out today, met people too. Now back and both tired!
Just about to watch the end of a programme about retiring to Russia, we visited so the memories and scenery are good. This was just after perestroika so an interesting time. I am gratefully that we travelled when we could.
Just a reminder to do things while we can.

 

[Agzy]

Feeling awful about how I reacted today and, to be honest, ashamed. Things have been going so very smoothly lately and even ‘normal’ and could almost forget about her ALZ. Today I went to visit my youngest daughter, a mother of 5 doing a nursing degree who needed support and a sounding board so, as it is something she rarely wants was I was more than willing. OH was happy with that and said why don’t you have a game of golf, meaning the practice field near to my daughter and so off I went and agreeing to be back for lunch which I was. As I opened the door back home I was met by so much anger demanding where I had been and did I know that there was a dirty mark on the hall mat left by my shoes!
Next thing was a tirade of how she has to do everything, which is totally untrue and unfounded, but she was livid. My first words conciltory and automatically non confrontational but with no affect and so I lost it and just yelled and shouted back which became a slanging match followed by silent treatment which nothing can breach or so it seems.
That’s it really, we have sat in silence all afternoon with her, as she does every day, watching the old repeat TV programmes all of which are recorded overnight and during the day.
I lost all understanding and compassion and at the time just ignored the obvious fact that she had forgotten where I had gone and that she can’t help being obsessive about cleanliness. I know she will forget most of this but I most certainly won’t that’s for sure.
Thanks for letting me rant.

 

[Grahamstown]

Thanks for letting me rant.

I am with you in these feelings and get very mad at his alcohol obsession which makes for constant stress as I control it with vigilance. I lose my cool and just say things and wish it was all over somehow or other. I logged on to have a rant and here I am.

 

[AliceA]

Poor you, you were caught unawares. Self compassion is important if we are to carry on. AliceA