Feeling drained out.

[AliceA]

I am just drained out, by the end of the day a sharp retort about not able to read his mind made me well up and feel very sorry for myself. I had that feeling after a good cry but without the relief.

I am fairly positive, I prefer the word challenge rather than problem.
I had a too full a day yesterday. Simple things escalated.
Living in a lovely rural village three miles and a bit from town over the border it seems to be like living on the moon.
Local services have gone, there is less reason to go out, I know the dangers of that.

I just need transport that is regular, reliable and caring for a 10 minute journey to a day centre.
All services seem confined to county and not location. I am expecting to see barred wire, checkpoints and armed guards soon. I think the village should become independent perhaps. Any ideas for a flag?


I spent the morning phoning around and listening to music! Our nearest taxi has closed for serious ill health.
Another seemed so expensive, it put 60 to 70% on the 4 hours day centre costs. One volunteer car service said no another said Maybe but only a few ahead at a time. Both are short of drivers.
I was advised to phone Citizens advice, after a very long wait, my landline phone claimed to be low on battery, so I charged it and used another to try again.
The man was very helpful, said he would check with colleagues. He duly rung back, said there was no answers and suggested an arranged interview next week.

I think perhaps we both need a needs assessment. We are selfunders until the savings run out. Has anyone any experience of this? The pitfalls! The advantages in practice?

We then walked to a communal lunch, numbers were very low so I felt obliged to encourage the volunteers and feed the conversations. Not singing like Geraldine, but tired when I got home.
I was greeted by several missed calls and a brimming email box.
I see what is black about Black Friday,
Then I was snapped at and that was the final straw.

Caring is one thing, but the amount of obstacles is something else. The amount of energy needed just left me drained out. I just hoped no one would call I would have wept.

Still another day, another taxi firm. Sent a message too early to phone. Yet to explore the use of Back packs to fly there and back. Not really keen on heights!

 

[Grannie G]

It must feel dreadful not to have access to services Alice. It just adds to the feelings of isolation when we as carers are or have been isolated enough already.

However positive we try to be there are times when we are sorely tested.

I hope you get attendance allowance. It is the one benefit which is not means tested.

 

[kindred]

I am just drained out, by the end of the day a sharp retort about not able to read his mind made me well up and feel very sorry for myself. I had that feeling after a good cry but without the relief.

I am fairly positive, I prefer the word challenge rather than problem.
I had a too full a day yesterday. Simple things escalated.
Living in a lovely rural village three miles and a bit from town over the border it seems to be like living on the moon.
Local services have gone, there is less reason to go out, I know the dangers of that.

I just need transport that is regular, reliable and caring for a 10 minute journey to a day centre.
All services seem confined to county and not location. I am expecting to see barred wire, checkpoints and armed guards soon. I think the village should become independent perhaps. Any ideas for a flag?


I spent the morning phoning around and listening to music! Our nearest taxi has closed for serious ill health.
Another seemed so expensive, it put 60 to 70% on the 4 hours day centre costs. One volunteer car service said no another said Maybe but only a few ahead at a time. Both are short of drivers.
I was advised to phone Citizens advice, after a very long wait, my landline phone claimed to be low on battery, so I charged it and used another to try again.
The man was very helpful, said he would check with colleagues. He duly rung back, said there was no answers and suggested an arranged interview next week.

I think perhaps we both need a needs assessment. We are selfunders until the savings run out. Has anyone any experience of this? The pitfalls! The advantages in practice?

We then walked to a communal lunch, numbers were very low so I felt obliged to encourage the volunteers and feed the conversations. Not singing like Geraldine, but tired when I got home.
I was greeted by several missed calls and a brimming email box.
I see what is black about Black Friday,
Then I was snapped at and that was the final straw.

Caring is one thing, but the amount of obstacles is something else. The amount of energy needed just left me drained out. I just hoped no one would call I would have wept.

Still another day, another taxi firm. Sent a message too early to phone. Yet to explore the use of Back packs to fly there and back. Not really keen on heights!

Sweetheart, I know, the endless endless obstacles. This is just a wonder as I don't know. Do needs assessments actually work? Are they ever actually acted on? Does anyone know?
with love and all thoughts, Geraldinexxxx

 

[Batsue]

@AliceA you have my sympathy, I know the feeling of being on the moon, we are 16 miles from the nearest facilities and have no bus or taxi in the area, I would love to be able to send mum to a day centre for a couple of days each week.

 

[Lindy50]

@AliceA I am with you all the way x
It sounds to me as though needs assessments (and/or a Carers assessment) would be an excellent idea.
A social worker ought to be able to help with some of these practical problems, I hope so anyway. After all it’s no usd being self funding if you physically can’t access services.....
Please do ask for an assessment.
Sorry am on phone on train so this is short.
Thinking of you.
Lindy xx

 

[marionq]

We are only a small island so it makes me mad when folk are cut off from services fir the sake of a few miles. Get on to SS Alice and your local councillor. You need a needs assessment.

 

[Sad Staffs]

I am just drained out, by the end of the day a sharp retort about not able to read his mind made me well up and feel very sorry for myself. I had that feeling after a good cry but without the relief.

I am fairly positive, I prefer the word challenge rather than problem.
I had a too full a day yesterday. Simple things escalated.
Living in a lovely rural village three miles and a bit from town over the border it seems to be like living on the moon.
Local services have gone, there is less reason to go out, I know the dangers of that.

I just need transport that is regular, reliable and caring for a 10 minute journey to a day centre.
All services seem confined to county and not location. I am expecting to see barred wire, checkpoints and armed guards soon. I think the village should become independent perhaps. Any ideas for a flag?


I spent the morning phoning around and listening to music! Our nearest taxi has closed for serious ill health.
Another seemed so expensive, it put 60 to 70% on the 4 hours day centre costs. One volunteer car service said no another said Maybe but only a few ahead at a time. Both are short of drivers.
I was advised to phone Citizens advice, after a very long wait, my landline phone claimed to be low on battery, so I charged it and used another to try again.
The man was very helpful, said he would check with colleagues. He duly rung back, said there was no answers and suggested an arranged interview next week.

I think perhaps we both need a needs assessment. We are selfunders until the savings run out. Has anyone any experience of this? The pitfalls! The advantages in practice?

We then walked to a communal lunch, numbers were very low so I felt obliged to encourage the volunteers and feed the conversations. Not singing like Geraldine, but tired when I got home.
I was greeted by several missed calls and a brimming email box.
I see what is black about Black Friday,
Then I was snapped at and that was the final straw.

Caring is one thing, but the amount of obstacles is something else. The amount of energy needed just left me drained out. I just hoped no one would call I would have wept.

Still another day, another taxi firm. Sent a message too early to phone. Yet to explore the use of Back packs to fly there and back. Not really keen on heights!

Hi Alice
You are always there for me, I wish I could offer you words of comfort. You are really struggling and I know how tough much of that can be.

When the social worker eventually called about the referral I had made, and of course I had sorted it myself by then, I was so angry and upset. It’s like no one in authority cares. I couldn’t talk or argue with her because I was so upset, angry, disappointed. I didn’t know how to make her understand. I felt like they didn’t care if we lived or died. I was despondent.

Up to that point we have had support from professionals, such as getting AA, reduced council tax, refuse people now collect bins from house, additional stair rail, etc. And all that was easy and made us feel good.

What is it with some that we are not a priority? Is it because we are old, no longer of use to society, a drain on resources.

Sorry, Alice, I’m probably making things worse for you.

The one positive thing to come out of my husbands dementia is the care, love and support I have been given by people like you. You will know where I am coming from, but just to add, that I’m sorry it is such a tough time for you. I wish I could be there in person for you, but I’m thinking about you.
With much love, Barbara xx

 

[AliceA]

It must feel dreadful not to have access to services Alice. It just adds to the feelings of isolation when we as carers are or have been isolated enough already.

However positive we try to be there are times when we are sorely tested.

I hope you get attendance allowance. It is the one benefit which is not means tested.

It just seems so short sighted, a bit more help will keep us away from depending on the Local Authority in the future. I looked at the Northamptonshire Health Authority, many conditions were mentioned but not for carers, dementia, geriatrics. The film about continence was about an Autistic child, important but no help to our age group. Are we invisible?
The contact buttons were dead! Even though they reckoned to want to hear from people.

My husband gets full AA. I have had Council Tax reduced. I am planning to use this to fund day centre.
The advantage of the care home is we can have several days if needed. Other day centres are much further away and only once a week. I feel continuity is so important. The surroundings are safe with a garden too.
It is growing on me now I have looked at the checklist. Thanks for you support.

 

[AliceA]

Hi Alice
You are always there for me, I wish I could offer you words of comfort. You are really struggling and I know how tough much of that can be.

When the social worker eventually called about the referral I had made, and of course I had sorted it myself by then, I was so angry and upset. It’s like no one in authority cares. I couldn’t talk or argue with her because I was so upset, angry, disappointed. I didn’t know how to make her understand. I felt like they didn’t care if we lived or died. I was despondent.

Up to that point we have had support from professionals, such as getting AA, reduced council tax, refuse people now collect bins from house, additional stair rail, etc. And all that was easy and made us feel good.

What is it with some that we are not a priority? Is it because we are old, no longer of use to society, a drain on resources.

Sorry, Alice, I’m probably making things worse for you.

The one positive thing to come out of my husbands dementia is the care, love and support I have been given by people like you. You will know where I am coming from, but just to add, that I’m sorry it is such a tough time for you. I wish I could be there in person for you, but I’m thinking about you.
With much love, Barbara xx

We are only a small island so it makes me mad when folk are cut off from services fir the sake of a few miles. Get on to SS Alice and your local councillor. You need a needs assessment.

 

[AliceA]

Hi Alice
You are always there for me, I wish I could offer you words of comfort. You are really struggling and I know how tough much of that can be.

When the social worker eventually called about the referral I had made, and of course I had sorted it myself by then, I was so angry and upset. It’s like no one in authority cares. I couldn’t talk or argue with her because I was so upset, angry, disappointed. I didn’t know how to make her understand. I felt like they didn’t care if we lived or died. I was despondent.

Up to that point we have had support from professionals, such as getting AA, reduced council tax, refuse people now collect bins from house, additional stair rail, etc. And all that was easy and made us feel good.

What is it with some that we are not a priority? Is it because we are old, no longer of use to society, a drain on resources.

Sorry, Alice, I’m probably making things worse for you.

The one positive thing to come out of my husbands dementia is the care, love and support I have been given by people like you. You will know where I am coming from, but just to add, that I’m sorry it is such a tough time for you. I wish I could be there in person for you, but I’m thinking about you.
With much love, Barbara xx

Not at all, we are all in the same boat, drifting! I shall be thinking of you next week. I have found so many walk the extra mile. People are kind.
I hope things go smoothly next week. with Love xxx

 

[AliceA]

Sweetheart, I know, the endless endless obstacles. This is just a wonder as I don't know. Do needs assessments actually work? Are they ever actually acted on? Does anyone know?
with love and all thoughts, Geraldinexxxx

I am not sure about the matter either. The Carers Assessment helped me focus. The assessor really listened and gave me names and numbers but many Close at hand were also out of area. Enjoy your Sunday and time with friends in church. Xxxx

 

[AliceA]

We are only a small island so it makes me mad when folk are cut off from services fir the sake of a few miles. Get on to SS Alice and your local councillor. You need a needs assessment.

Thank you, I am not sure what it will do but it could open up other avenues to explore. My own health issues are not helping the situation.
My husband says we have enjoyed too many birthdays!
Yes, we are a small island. I was amazed at the average care home charge in the north is so much cheaper than in the south.
Look after your self.

 

[AliceA]

Hi Alice
You are always there for me, I wish I could offer you words of comfort. You are really struggling and I know how tough much of that can be.

When the social worker eventually called about the referral I had made, and of course I had sorted it myself by then, I was so angry and upset. It’s like no one in authority cares. I couldn’t talk or argue with her because I was so upset, angry, disappointed. I didn’t know how to make her understand. I felt like they didn’t care if we lived or died. I was despondent.

Up to that point we have had support from professionals, such as getting AA, reduced council tax, refuse people now collect bins from house, additional stair rail, etc. And all that was easy and made us feel good.

What is it with some that we are not a priority? Is it because we are old, no longer of use to society, a drain on resources.

Sorry, Alice, I’m probably making things worse for you.

The one positive thing to come out of my husbands dementia is the care, love and support I have been given by people like you. You will know where I am coming from, but just to add, that I’m sorry it is such a tough time for you. I wish I could be there in person for you, but I’m thinking about you.
With much love, Barbara xx

Xxx

 

[AliceA]

@AliceA I am with you all the way x
It sounds to me as though needs assessments (and/or a Carers assessment) would be an excellent idea.
A social worker ought to be able to help with some of these practical problems, I hope so anyway. After all it’s no usd being self funding if you physically can’t access services.....
Please do ask for an assessment.
Sorry am on phone on train so this is short.
Thinking of you.
Lindy xx

Many thanks, yes, I will do this. I have had a Carers Assessment, this gave me good information but no real help. Xxx

 

[AliceA]

@AliceA you have my sympathy, I know the feeling of being on the moon, we are 16 miles from the nearest facilities and have no bus or taxi in the area, I would love to be able to send mum to a day centre for a couple of days each week.

 

[AliceA]

Poor you, you must feel out on a limb. X

 

[dancer12]

I am just drained out, by the end of the day a sharp retort about not able to read his mind made me well up and feel very sorry for myself. I had that feeling after a good cry but without the relief.

I am fairly positive, I prefer the word challenge rather than problem.
I had a too full a day yesterday. Simple things escalated.
Living in a lovely rural village three miles and a bit from town over the border it seems to be like living on the moon.
Local services have gone, there is less reason to go out, I know the dangers of that.

I just need transport that is regular, reliable and caring for a 10 minute journey to a day centre.
All services seem confined to county and not location. I am expecting to see barred wire, checkpoints and armed guards soon. I think the village should become independent perhaps. Any ideas for a flag?


I spent the morning phoning around and listening to music! Our nearest taxi has closed for serious ill health.
Another seemed so expensive, it put 60 to 70% on the 4 hours day centre costs. One volunteer car service said no another said Maybe but only a few ahead at a time. Both are short of drivers.
I was advised to phone Citizens advice, after a very long wait, my landline phone claimed to be low on battery, so I charged it and used another to try again.
The man was very helpful, said he would check with colleagues. He duly rung back, said there was no answers and suggested an arranged interview next week.

I think perhaps we both need a needs assessment. We are selfunders until the savings run out. Has anyone any experience of this? The pitfalls! The advantages in practice?

We then walked to a communal lunch, numbers were very low so I felt obliged to encourage the volunteers and feed the conversations. Not singing like Geraldine, but tired when I got home.
I was greeted by several missed calls and a brimming email box. , and just to let you know I used to be sweet
I see what is black about Black Friday,
Then I was snapped at and that was the final straw.

Caring is one thing, but the amount of obstacles is something else. The amount of energy needed just left me drained out. I just hoped no one would call I would have wept.

Still another day, another taxi firm. Sent a message too early to phone. Yet to explore the use of Back packs to fly there and back. Not really keen on heights!

Hi AliceA:

I really feel for you, it is hard enough dealing with this dreaded disease. We don't need any added problems. I am fortunate that we live in a big city & local transportation is available. I can't imagine not having access to it.

That being said now I'm going to get to my nasty side, and just to let you know I used to be sweet, nieve and positive but dementia changed that. I didn't ask for my husband to get dementia so why should I have to suffer. I believe THAT THE SQUEAKY WHEEL GETS THE CREASE so start squeaking, and not at you husband either HE HAS DONE NOTHING WRONG. I've learned that you don't ask quietly but you tell them what you need loudly and as often as need be. I know it's a pain now but it will be worth it in the future. How many times has a politician asked for your vote quietly? Have them do what they've been voted in to do "GET YOU NECESSARY TRANSPORTATION" You deserve it, you want it, you need it now go get it. Nobody gets what they don't ask for, it's just a matter of who you get involved.

All my nastiness set aside I do sympathize with you and I really do understand how difficult it is some days. Adult daycare maybe your saving grace. Do you think daycare might subsidize transportation costs (if not all maybe half).?

Good Luck & All The Best
Many Cyber Hugs

 

[AliceA]

Well another week, another day.
Heating system has a problem so plumber calling in however late.
People are so kind. He has called and no charge, even kinder.

I started the day with people to chase or contact.
I am still trying to fathom how to get reliable transport.
Our daughter has offered some Wednesday help on her day off and when it is not a chemo day for granddaughter and holidays etc. She will plan to fit the two trips in.

I would rather save her for one offs. However I am very grateful for this offer.
The smaller taxi firms do not want such a short committment of one and a half miles a twice day.
I do not blame them.
The Town Taxi firm would do it for £28 for taking and bringing home.
I am thinking of three mornings so cost adds up.
The volunteers are hard pressed with medical appointments so have said no. One did say maybe but the uncertainty will counter the benefits.
I shall feel I have constantly to check and remind,
I spoke to another group in another area but right county, they are putting thinking caps on.
I found the actual border is a canal bridge, I thought if we bought a boat I could moor in whatever county did the most convenient deal!

Then a breakthrough, still no firm offer. I was advised to ring Social Services to flag up the problem.
I was asked if we were known to them, I said no but she checked and we were! Quite unbeknown to me.
My husband had been discharged home too early from hospital n the wrong side of the border, we had Hospital at Home from our own county three years ago.
This generated a record.
They were empathetic, and when They heard the plan, it is being referred to the Assessment team. There are four categories. One was abusive behaviour, I was deemed 2. I joked I better hit out and be category one.
She laughed and laughed more when I said Well, prison would mean three meals a day, a TV and someone to check I was all right.
She did admit the urgency was about me trying to cope and the consequences if I did not. The fact I never leave him alone because of dysphagia rung a warning bell.
As I started, people are kind, it is the system that gets us.
So the saga continues. I did have a few laughs too.

 

[AliceA]

Well a warning bell may have rung but no one is acting on it! I will have to chase Social Services again.
Tonight I feel flat, just tired really.
I think this is partly because a promise of help from the family has evaporated, I thought it well might but it just brings home again what a lonely path this seems.
Getting to a couple of events, good but so tiring have worn me down. As someone else said getting ready is no five minute job these days.

I agreed to an organisation asking one of the volunteers to put the situation that we are in on their local Face Book page. This means it is off record of normal checks.
The volunteer works full time so is unable to assist himself, it is extremely kind of him. A daughter recognised it so I suddenly felt exposed.
I am fiercely protective of the man I care for in so many ways.
The irony is that if I lived a mile up the road, I would be in the right county for daycare with the bus that picks up that is a mile and a half from our present home.
Well, I will have to sleep on it and trust the wheels are rolling.

 

[Grannie G]

You sound really tired Alice and very isolated.