Just confirmed my family have planned my life for me

Pitlanepiglet

moneyistooshorttomention wrote: »

Now "shouting" is one thing I can do and will feel better able to do from a distance in fact in some ways.

I wish you luck.

What jumps out at me from many of your posts though is that you don't actually appear to have much experience of how these systems (Social services, NHS etc.) actually work. I don't mean that unkindly, you just don't say the things that those of us who have been through the mill usually say.

How much involvement do you actually have with your parents care at the moment or are they actually doing pretty well on their own?

Social services and the NHS are a nightmare to deal with remotely. Social services schedule care assessments and OT assessments to suit themselves and often cancel them at the last minute because of sickness or similar. If we are not there for an assessment, in MiL's case we find that she has no idea subsequently of what was discussed and that her care needs haven't been address because she hasn't shouted loudly enough and was keen "not to be a burden". Neither she nor my Dad will admit that they can't do things and I think that is a very common approach in those of increasing years and decreasing abilities.

When her mobility equipment was supplied it had to be collected from the local chemist as this is the new system in our area, so we had to collect it and set it up. We could have shouted as much as we liked over the phone but that is how the system works. Then when her fantastic electric riser chair was supplied, the bloke rang me without warning to say that he was on her doorstep and why wasn't she opening the door - we've put bells with flashing lights in place but she had her TV up loud and couldn't hear and hadn't noticed the lights.

Dad then had some hospital treatment and I had to physically go to the hospital 30 miles away and sit at the nurses station and refuse to move before they would tell me what was going on. I hold full power of attorney and his medical records were marked at admission that he gave his full consent for them to talk to me. Yet I still get a 9.30pm phone call from him in a distressed state because they waited until the evening when he was alone to tell him that he had a spinal problem. He didn't understand the details, he didn't know what it meant and was terrified that he wouldn't walk again and they wouldn't tell me over the phone despite all the levels of consent.

I'm not saying that you should stay and care but as others have said I think you underestimate how difficult these things are to deal with from afar. We are suggesting that you may need to be a bit more realistic about how this will work out.

...I still don't get how computer literacy is the be all and end all to people remaining independent. As I said earlier, my Dad does pretty well on his computer, but he still doesn't remember to lock his doors and take his medication!

mumps

The distance thing is difficult. My aunt and uncle only had me and my sister, we tried to make sure one of us visited every month, so I did one month she did the next. Tiring and expensive but had to be done.

We had prescription meds delivered by pharmacy, no need for re ordering on the internet just set it up for Boots to reorder and deliver. We could do an online shop if they needed it but they liked to get out if they could. We paid a local lady for extra help, trips to hospital, collecting things etc. I also set up a day centre for him twice a week so aunt had a break. None of it perfect but generally muddled through. We got CHC for him at the end. I think the cut backs are making things very difficult, we found AgeUK a big help, the local hospice was also great and their social worker was better than the one from the local authority but that wasn't hard.

We did wish they would go into sheltered housing but a bit hypocritical as I wouldn't want to do it myself but I guess in 20 years it might look different.

Pitlanepiglet

mumps wrote: »

We paid a local lady for extra help, trips to hospital, collecting things etc.

This is probably the best thing to do, find someone who will effectively take on the "sorting out" role. We do this with MiL as whilst she's only 5 miles from us she was very keen to keep a degree of independence but wasn't actually able to do herself the things she wanted to do. We found a lovely lady who "did" for some of the other folk in the sheltered block she's in and she does some of MiL's washing (we do towels and bedding, lovely lady does the lighter stuff that she can do in a couple of hours using the washer and dryer in the block). She very definitely did not want her son (OH) washing her clothes - it was a real issue for her!

I'm interested mumps that the medication set up works for you, quite often we find that Dad's medication isn't in the chemist as the GP wants to see him before repeating. I suspect it might be because he's diabetic so they need to ensure all is OK but every now and again there is a panic as he's failed to attend an appointment and there are no tablets.....

mumps

Pitlanepiglet wrote: »

I'm interested mumps that the medication set up works for you, quite often we find that Dad's medication isn't in the chemist as the GP wants to see him before repeating. I suspect it might be because he's diabetic so they need to ensure all is OK but every now and again there is a panic as he's failed to attend an appointment and there are no tablets.....

That is awkward for you, we found it worked really well. The pharmacy was nextdoor to the surgery so maybe that made it more straightforward.

Pitlanepiglet

mumps wrote: »

TThe pharmacy was nextdoor to the surgery so maybe that made it more straightforward.

Dad's is too.!..Short of going to every GP/nurse appointment with him (which he doesn't want to happen), it's difficult to know when he ought to be where. It's a bit of an evolving situation as he ages but we've now moved to us keeping his appointments on our calendar so that OH can make sure that he goes to the appointments. As we're around, it's not a huge problem, OH keeps an eye on his medication and makes sure that he checks at the chemist before it's needed but it has been a bit more of a problem. I guess it's all changing as his needs/abilities change.

MiL's chemist/GP set up seems to work much better but even given her age her medical needs are less than my Dad's so there seems to be less reassessment.

mumps

Pitlanepiglet wrote: »

Dad's is too.!..Short of going to every GP/nurse appointment with him (which he doesn't want to happen), it's difficult to know when he ought to be where. It's a bit of an evolving situation as he ages but we've now moved to us keeping his appointments on our calendar so that OH can make sure that he goes to the appointments. As we're around, it's not a huge problem, OH keeps an eye on his medication and makes sure that he checks at the chemist before it's needed but it has been a bit more of a problem. I guess it's all changing as his needs/abilities change.

MiL's chemist/GP set up seems to work much better but even given her age her medical needs are less than my Dad's so there seems to be less reassessment.

My uncle was on alot of med and he did have lots of changes due to his rapidly changing condition. The pharmacy were really great, the only problem was after hospital stays when the hospital always seemed to have messed it up.

moneyistooshorttomention

Certainly been doing a lot of thinking on from various posts on here - so I would say this thread has been useful to clarify matters.

I am minded to send a letter to my brother asking what ideas he has for what "we" might usefully do to ensure the welfare of "our" mother. My very distinct suspicion is that he will have no suggestions whatsoever - but I suppose I could always end up surprised that he might have a useful suggestion or two. My feeling is that he will have no useful response whatsoever to this - but at least I will have tried - so I think it will be worth doing this. I will keep it short and polite and see...

So - I have noted those (in the minority as far as I can see) posters who feel I should/will feel "guilty" if I go ahead with "living my own life". I think I understand where they are coming from - but I can also note the posters who feel angry/resentful that they have been prevented from "living their own lives" because of being put in the position of being carers (despite no active choice to be on their part). So that seems to boil down to:

- maybe feeling "guilty" if I go ahead with leading my own life (and wondering whether I would or no - because my suspicion is that its more likely to be women who feel that way and I have my doubts that men ever would). Therefore there is a good chance that if this is basically a "female" way of feeling then I may well not feel that way anyway

OR

- feeling resentful and bitter at not leading my own life and longing for the home and lifestyle I have decided on/need of myself (and I know, of a certainty, that I would feel that way if I gave up any hope of My Own Life). I am absolutely pining for my Countryside/detached house/garden that I cannot have here and very very aware that I have no realistic option but to sell my current house and I am not going to deny to myself that this is how things are and tell myself a pack of lies that this situation is satisfactory and/or I am happy with it...because it isnt and I'm not. Whatever else happens...I do think people should be honest with themselves and I will continue to be so.

So - I'm going to be running past my friends ITRW the idea of writing a letter to my brother asking what "we" think could usefully be done (without any great hopes that he will have any constructive thoughts on this - but at least I will have tried anyway) and take it from there.

I wish I didn't feel so VERY doubtful that my brother has had any thoughts whatsoever about this situation than "she will deal with it and I can forget all about it" ...but I do have to be realistic that this is almost certainly the case. But, at least, I will have tried to bring him on board and see if he can think of a solution to this which will be acceptable to all...

Thanks everyone for your input on this.:T

HariboJunkie

moneyistooshorttomention wrote: »

Certainly been doing a lot of thinking on from various posts on here - so I would say this thread has been useful to clarify matters.

I am minded to send a letter to my brother asking what ideas he has for what "we" might usefully do to ensure the welfare of "our" mother. My very distinct suspicion is that he will have no suggestions whatsoever - but I suppose I could always end up surprised that he might have a useful suggestion or two. My feeling is that he will have no useful response whatsoever to this - but at least I will have tried - so I think it will be worth doing this. I will keep it short and polite and see...

So - I have noted those (in the minority as far as I can see) posters who feel I should/will feel "guilty" if I go ahead with "living my own life". I think I understand where they are coming from - but I can also note the posters who feel angry/resentful that they have been prevented from "living their own lives" because of being put in the position of being carers (despite no active choice to be on their part). So that seems to boil down to:
- maybe feeling "guilty" if I go ahead with leading my own life (and wondering whether I would or no - because my suspicion is that its more likely to be women who feel that way and I have my doubts that men ever would). Therefore there is a good chance that if this is basically a "female" way of feeling then I may well not feel that way anyway

OR

- feeling resentful and bitter at not leading my own life and longing for the home and lifestyle I have decided on/need of myself (and I know, of a certainty, that I would feel that way if I gave up any hope of My Own Life)

So - I'm going to be running past my friends ITRW the idea of writing a letter to my brother asking what "we" think could usefully be done (without any great hopes that he will have any constructive thoughts on this - but at least I will have tried anyway) and take it from there.

Thanks everyone for your input on this.:T

You mentioned that your brother has grown up children. Are they close to their grandmother? I may be confusing you with another poster but I think you mentioned that you aren't close to his children but perhaps they should be included in any discussion on the future of their grandparents.

I'm very far removed from your situation in that my siblings would bend over backwards to help me out and we would all be there for our parents but for whatever reason this isn't true for you and I have tried to think about it from your pov. I keep coming back to the fact that if I was your mother I would want this discussed with ME and if your father is aware of his decliningg health I would say he would be glad of any reassurance you could give him about your mother's future needs being met

moneyistooshorttomention

I think you are confusing me with another poster re the grandchildren.

My mother thinks the world of those grandchildren, but obviously doesn't get to see much of them these days (as they live elsewhere). I am guessing they feel much the same way towards my mother as yer average young adult feels towards grandparents they rarely see.

There doesn't appear to be any way to reassure my father about the future for his wife. I am hoping to sort this situation out a bit so that he can feel a bit reassured, but there currently doesn't seem to be a way forward to achieve this. The best I have been able to do currently is to tell him he mustn't put himself through any more pain/hassle etc of dealing with his health problems unless HE himself wants to and that I don't think it's reasonable to just let the medics just do whatever they think they will regardless of his own personal wishes. I try to get both my parents to do what suits them best and stand up for themselves when it comes to whatever decisions they make about their health care needs (ie rather than just going along with whatever the medics decide - regardless of whether it is likely to "work" or no). My mother does sometimes question the medics and fight for her own best interests now - which is huge progress to the way things used to be (ie of her just going along with whatever they recommended regardless). She has recently fought back against an attempt to ration her out of a 2nd cataract operation that they were trying to do and is scheduled to have this shortly because she refused to accept their verdict that she didnt need it after all (a verdict formulated shortly after cutbacks came in:cool:).

HariboJunkie

Aw that's good that you are close to your nieces/nephews .

I must be mixing you up with another poster whose circumstances were very similar to yours but she had no relationship at all with her brother's children if I remember correctly.. :think:

It's good news that your mum is getting what she needs from the NHS. It's shocking if your dad is being forced into treatments he doesn't want. I'd be complaining very loudly about that if i were you.

And don't underestimate your brother's children. In my family we were very close to our grandparents and all banded together to give them any help they needed. We were brought up to recognise them as hugely important in our lives.