Anyone in Bedfordshire and has family with... - PSP Association

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Anyone in Bedfordshire and has family with cbd


Hi I'm in Bedfordshire. My dad doesn't live with me and has cbd. My sister doesn't contact me much. Mum has mixed dementia. They both have live in carers so that's good it's just sometimes I feel so alone with the burden and responsibility of making all the decisions and sorting finances appointments trying to get dad to make a will. List goes on. And the heartbreak of watching both progress with their condition. Scared of the unknown scared of the future although people keep saying think in the moment. I can't. I'm constantly looking out for more symptoms and asking if I've made right decisions. Is anyone else like this or is it just me. Anyone in Bedfordshire? Be nice to meet up with people for coffee and chat that understand. I never feel confident going to doctors with dad. They just say they've no heard of it and I feel like they give up on him because he is old. Rant over

17 Replies

Oh my goodness you've got a lot on your plate. I am too far to meet up for coffee (north yorkshire) but if I was I would be there and I'd visit that silly doctor with you. You need some support. All I can suggest is the PSPA association they will know of a group near you and can send you leaflets to give to your gp although if they have someone in their practice with CBD they should have read up on it .

Hang on in there and keep posting on here everyone's lovely and I bet someone will live near you.

Love Lynda 😊

144jim in reply to dollydott

Thanks lynda I've found out about a cbd group that's once a month so I'm going to go to that. Dad's started to decline fast cognitively and he is much more tired now. The memory clinic are saying they think it's alzeimhers although it's not a typical presentation. He is going to the hospice for a bit of physio and a lady who talks about advanced care planning introduced herself. It seems they are confirming its corticobasal syndrome. I thought I was prepared but I'm not. I think I've been hoping it isn't and in denial cos all the time they were trying to diagnose in my head there was a chance it wasn't. Now I'm confronted with it and I'm grieving and struggling to accept it x

dollydott in reply to 144jim

It's a scary thing to be told your loved one has CBD

I can remember feeling that they had made a mistake and struggling to accept it when mum was diagnosed with it. It's horrible isn't it?

I'm glad you have found a CBD group in your area hopefully you will get lots of support and it's good that you have also got the hospice on board too.

Please take good care of yourself not only have you got your dad to worry about but your mum too it's going to be tough

I hope that your sister will give you some support.

Please keep in touch and let us know how you get on

Love Lynda xx

Welcome to the site. Sorry I live in the US and there's a big pond between us or I'd meet you for coffee! My dad had CBD as well and I took care of all his paperwork matters plus appts etc. It can be very tiring but it something that has to be done. It is good both your parents have carers so you and your family have help in that respect. It's not easy watching the progression and you'll second, third, maybe even fourth guess yourself about a decision. I'd suggest reading through back posts or ask questions to get an idea of what you may have to deal with as time goes on. You can plan ahead for some things but a lot of the time you'll be reacting to whatever symptom pops up. Usually when something happens that requires a decision I found it best to access the situation and go with my first "gut instinct". For me too much analyzing just causes me to prolong a decision. Anything that you do should always involve the safety and comfort of you dad. Since both parents have issues I do strongly suggest getting a PoA and healthcare proxy for both, if someone doesn't already have it.


144jim in reply to Dadshelper

Hi a solicitor is suggesting I get a general poa set up to run alongside because I can't use it until he's lost mental capacity. I know what you mean about analysing. I do tend to do this an awful lot. It's such a rare condition that's not known about so I guess it's only natural to do this. I've just asked for a financial assessment for mum and the social worker did a needs assessment. Now she wants to question mental health for mums diagnosis of dementia in 2013.i can't believe it. Another complication. In the meantime mum's money is going down fast. This just delays. Maybe social services think if they change her diagnosis she doesn't have to have as much financial help

Welcome. We are all overwhelmed at times by the demands. There isn’t any down time for the most part. Something is always perking away in your brain. This is a very good place to vent. We all understand.

144jim in reply to Jeff166

Thanks Jeff this site is certainly supportive. I'm very grateful for everyone taking the time to reply to me


I live in the US and I’m having a cup of coffee while I write this.

How long ago was your dad diagnosed and if you don’t mind my asking, how old are your folks? Is it possible to take your dad back to the original doctor who mentioned that he has CBD? It sounds like the previous doctor is clued up on the disease.

I often say to “live in the moment” but I’m not very good at it. I wake at all hours during the night with anxiety. I analyze the day before and anticipate the next. Hubby hasn’t been able to make a single decision for years now. He used to be in charge of all of our finances and he was pretty much the decision maker. He’d apply the breaks if my spending was out of control and he just had a way of balancing everything out. Now... I might as well live alone because hubby cannot communicate much at all anymore. Sigh. Honestly, people tell me that I’m strong and that they don’t know how I do it. Well, guess what? I haven’t got a clue what I’m doing, I cry, I get angry, I second guess myself all of the time. When I start on this downward spiral I try to tell myself that I’m not doing anyone any good by worrying. That to worry accomplishes nothing. I try to push a reset button and turn on the positives. I concentrate on what I’ve done right. Pat myself on the back when the bills are paid on time. Appreciate the small victories. When all else fails I research more about the disease. I visit this site and I come to grips that it could be so much worse. I feel like I’m one of the lucky ones, because hubby is still here. His forgotten smile will appear once in awhile and that makes it all worth it.

You are not alone. We feel the way we feel and there’s nothing wrong with that. Remember to breathe.

I’m going to refill my coffee cup now. Nice chat.

Xoxo from I SewBears

144jim in reply to SewBears

Hello I'm sorry for delay in replying. It sounds like you are going through so much. Alot of what you say strikes a chord with me too. I question all my decisions. Dad isn't really making them anymore. He is 83 now and it's taken about a year for them to conclude corticobasal. They now say probably alzheimers too but not presented in a typical way. I now feel I'm only just realising it's palliative so now I'm starting to grieve. All along I've hoped it wasn't. He is really tired now and his memory isn't so good. Each time I see him I want to feel happy but now I feel sad inside and I keep thinking what if this is the last time I see him. I was clinging onto hope. Im trying to find out about hydrotherapy exercises. He's always loved the water. My sister lives a distance away. I've told her he's deteriating but she still hasn't come down. She keeps saying to me treatment and funding is better where she lives dad should go up there. I keep saying he's too tired to make that journey. Then she says don't I want to prolong his life. I realise this is her guilt so I try to not let it get to me. I've submitted a flexible working plan to reduce my hours to my nhs manager so I can spend more time with dad and its been refused so now I have to rethink another x

SewBears in reply to 144jim

Oh boy! None of this is easy and I’m sorry that flex time wasn’t approved. What about a short leave of absence or maybe paid vacation, just long enough to tend to your dads wish list? Try to make some memorable moments every chance that you can when you’re with him. Take lots of photos. He wouldn’t want you to be sad so try and make some happy memories before it’s too late. Just make each visit count if you can. I wish I could offer more advice but this is all that’s coming to mind at the moment. Hang in there. Sending hugs.

Xoxo from I SewBears

The Hertfordshire support group includes members from Bedfordshire. The PSPA Helpline 0300 0110 122 will give you contact information. We meet every month in Redbourn near M1 Junction 9

144jim in reply to MaureenHorne

Hi Maureen thanks.I'm going to see if I can get to the next one.too far for dad to come with good to meet everyone x

MaureenHorne in reply to 144jim

You'll be very welcome. The next meeting is on Saturday 13th April from 2.15pm to 3.45pm.

I always tell new people this is one place where you never have to explain and you are among friends who understand. If you contact me through the PSPA Helpline I will be able to send you the newsletter I 'll be emailing or posting to everyone about 10 days before the meeting. I look forward to hearing from you.

Wow...2011...You've been here a long time Maureen.....

Hi what a lot to cope with. Have you got POA, both financial & health set up for your Mum & your Dad? If not I would get that in place before a will, I find it hard enough dealing with financial institutions with POA, so definitely a must have. If either die intestate the rules are quite clear about who inherits - all to surviving spouse & if no spouse evenly split between children. As long as that fits with your father's wishes it's not so big a deal to die intestate - my brother did and I was able to handle his estate on behalf of my parents, no differently to when Dad died with a will. So maybe that's something you don't need to stress over?

With regard to decisions you will have made the best decision you could at that time, in the situation you were in, with the information and knowledge you had. We all have to make judgements about what is the best to do for our loved ones, sometimes we get it right, sometimes we may not. The fact that you have live in carers shows that you are making sure your parents are being well looked after and that is a huge plus. I moved my Mum from London to Cheshire to be near me when her health declined. We found a lovely flat in very sheltered housing with 24/7 on site duty managers and quite an active social side. In hindsight we moved her too late to make friends whilst she was still able to and a one bedroom flat wasn't the best idea as it means she can't have a live in carer and putting in a new bathroom, I put in the toilet a bit higher (so she didn't need a raised toilet seat) but now I know it's too high for a glide commode to go over. I've made lots of decisions which in hindsight may not have been the best, but it would have been worse not to make a decision and to have left Mum in London. So be brave, you are only human, sometimes we get it right, sometimes we get it partly right, sometimes we maybe wrong but we have tried to do our best and our parents will know that.

144jim in reply to AJK2001

Thanks for your reply. I've been advised to get a will done ASAP. The solicitor is coming to dad. This is because mum has mixed dementia and the house is only in dad's name. I've also been advised to get a general poa done because dads can't be used until he's lost capacity. I wish they would downsize their house but they wont

Not sure what you mean by a general POA, there used to be just one type but since 2007 you have to get separate ones for health & for finance. The health allows your attorney to make decisions for you when you no longer have capacity, the Finance one allows your attorney to handle your affairs (with your permission) any time you like. Look up the government website or Age UK they both have information about the different types and what they are used for. Even if using a solicitor you trust always good to be informed yourself, so you know what questions to ask.

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