Support for those who care for elderly parents - drop in as you need, everyone welcome

[CMOTDibbler]

All of us would rather not be here, but we need to be - with the people who really understand.

Hi everyone just been to visit Dad in his care home. He's been there about 6 weeks now I think. It's nearly 3 hours to get there (as opposed to 2 hours when he was in his own home). He seemed OK and certainly better than he was in hospital, where as I've written before we were told quite categorically by a panel of health care professionals he had no rehab potential, he;s now walking again. However, I now feel quite strongly he does not know who i am. It was hard to elicit any reaction form him. I put on my best smile, said "I'm Bob, your daughter" quite a few times, and just got a puzzled smile back. At one point he tried to put his hand through my face, as if to check I'm really there. I believe he has a lot of dreams and hallucinations and his experience of reality is quite distorted. It feels like I am really an orphan now.
The place itself is not going to win any prizes for design, decor etc but the staff are nice and always present so I'm counting my blessings there.
Bro visits weekly, me every 2-3 weeks and i'll continue to do so if only to signal to staff that we are involved and who knows, maybe it makes a difference to him. I'm over the exhausting stage of diagnosis, agitated dementia, setting up care at home, supervising everything etc, it's weird. I think I'm still getting used to not constantly being on call.

Oh bob, how sad for you Well done for trying so hard with him.

I am kind of in the same position - orphan and now over the panic-stations of trying to ensure DM is OK at home, although not quite as far down the line as you. I think it will be quite a shock for me seeing her in the home tomorrow, and her not being in her house (where I will be staying)

Will be thinking of you BTM. Things have moved very fast for you and you seem to be adapting remarkably well, but it can't be at all easy.
For me the house was symbolic of so much and for years I've struggled to keep it going and fix things,as if I was fixing my family in doing so.

Aww bob

I feel really strange about us selling the house (will be a while till we empty it!) despite having moved out over 32 years ago. I guess it might all be a bit easier for me as DM was never really the motherly kind of mother and I learned to be very independent from a very early age, so I don't miss having a mother IYSWIM, but I do feel a bit cast adrift somehow!

BTM. I still feel cast adrift and rootless :(

It's been one of the feelings that has stayed with me since mum died. I don't know when my own little family will feel like proper roots - it's not like I've lived properly with my parents for 32yrs since I went to uni. But I guess I was lucky that my family gave me that feeling of a secure home for so long.

I don't like it at all.

Bob, BTM and Helen. I can relate to feeling cast adrift a bit. I've woke. To an email with X-ray and blood test results from yesterday which show signs potentially of a spread to bones and a mass around heart but can't be sure without scan. We're waiting for biopsy results but there's suddenly talk of end stage cancer. I thought it would be a relief knowing the end might be in sight but I suddenly feel very sad.

Oh, I'm so sorry to hear that SPT.

So sorry SPT. It is so hard and it must stir up so many emotions. Take care. and even though it's early...

Really sorry to hear this SPT. You've been through quite a roller coaster in the last 2 weeks. I think i'll feel exactly the same when Dad reaches the end, even though throughout his illness I've often wished he had "something easier to manage, like cancer" (I know that doesn't cast me in a very nice light).

Thank you all, it's a huge help being able to unload here and I'm sorry I'm going on so much. I'm not sure the end stage bits have actually come from the Oncologist, I think it is Brother and Care team given the news about the potential spread and the fact that she has just very recently lost her appetite, unheard of for her.

Given the roller coaster it has been I'm trying not to jump to conclusions until biopsy results are in. But I looked at a couple of photos sent end of last month and said to DH seeing them that she looked as if she has cancer so I won't be surprised, her sister had breast cancer too but it was caught early and treated. feel I need to know for sure now but will have to wait till next week I think. If it is inflammatory breast cancer then the first talk of sore breast was about a year ago and I've read life expectancy without treatment for it as so aggressive is something like 12 to 18 months so it does fit.

Bob that doesn't put you in a bad light at all, I've thought much the same at times. I do feel if it is as it's looking , that I can get on with grieving again, knowing that it will be the final time and it will be a relief. I asked DH if that made me a bad person and he said he felt like that with his Dad. I'll ring my Dad later and let him know the latest. They separated in 1994 but never divorced, just legally separated so effectively he is still married to her which when I think about it I find a bit strange.

I've given up work as everything was getting too much. I was ill most of February and I think my body was saying enough so I listened.

Sorry to hear your health hasn t been good. I have sometimes felt i'm only keeping on by my fingertips and as you know my GP signed me off for 4 weeks back in december. Good to hear you listened and stopped. I don't want to come across as over dramatic but i am only 5 years younger than my mum was when she died, she was under stress and didn't stop, didn't get medical help and she died of a brain haemorrhage. So when my blood pressure went up to 150 I dod not feel too guilty taking the time off.
I feel late 40's/50s can be a dangerous time for women with everything we're juggling and we have to remember our own needs.

Yes I agree with you Bob. When mine shot up previously it was very sobering and I want to avoid that happening again. Late 40's/50's also the time we have hormonal changes to contend with who I think doesn't help. How are you feeling now ?

Not bad, I think I'm adjusting to not constantly react to crises/ problems with Dad and his care. And also the sadness of him deteriorating. My blood pressure has come down and work isn't as stressful as it was a few weeks ago.

That's good, am very pleased you're feeling ok.

Thanks SPT, and do look after yourself too as much as you can get away with!

Thank you.

Bob that's just how I feel too re wishing it was something "easier" to manage. And I also suffer from high BP - thank God you mentioned it, reminded me to take my pills, only nearly 12 hours late!

Well DM is in a bit of a twist, which I expected having received a text last night from one of her friends who had been to see her yesterday - worrying about how anxious and lonely she was. I texted her back to ask some more, but she still hadn't replied, do leaving me to a sleepless night before driving up 5hours
DM is confused, petulant and obviously feeling a huge loss of independence. The carers seem kind and the home is clean and warm and she says the food is good. However she was moaning about where her room is (they moved her to an ensuite as she had asked, but she was getting lost taking me to it (not v far!), some of the other residents and not having any money. God knows what she wants the money for! I think she is actually OK,, but I'm hoping to meet with the manager tomorrow as she was busy today.
Feel exhausted having cleared 1/100th of the crap in the house - luckily there is a tip near the home!

yep BTM Dad's friends also went through a phase of doing what I can only call dumps on me too. They'd visit him, see something that concerned them, then get straight on the phone to me. It went on for months till the sound of the landline ringing would get my heart thumping. I must say I am now quite selective about who I respond to, and if I can I send an email back, I don't ring as a phone call is more emotionally demanding. I know Dad's friends meant well but it got too much. I am sure settling in is difficult for most people, the only reason Dad hasn't expressed any resistance I think is he is now non verbal and quite advanced in his dementia. The Alzheimer's Society forum (talking point) has lots of good advice and threads on helping people settle in, might be worth having a look if you have time.

Thanks bob
She still hasn't replied to my concerned text so I can only assume she was dumping on me. Heigh ho!

BTM, my mother's sheltered housing warned me that any move would be difficult and that it would take around two month to settle. They were right. I dodged the issue by saying that the move was temporary, till she had recovered from her hospital stay and for a long time she referred to her new flat as "her holiday home". In her more lucid moments she would agree that she needed to stay where she was "until she felt better", and indeed revealed some of the fear and difficulty she had faced when living on her own. She goes through phases of liking and disliking where she is, sometimes referring to it as a prison whilst other times saying how nice the peple are and how good the food is, but after three years has forgotten about her previous home.

SPT, I am sorry. However it seems as if she is getting good care and attention. Possibly better than if she were in an NHS hospital.

NMS, that is reassuring to hear, thanks. I was expecting it to take a month or 2 to settle in.

Am currently in the bank sorting POA. The girl doing it is very helpful - it appears that this will work for linked ISAs with subsidiaries (hooray!) and she also advised me to call the home insurance to let them know that the house is now unoccupied as this will affect the insurance cover.

Well I spoke too soon. When the girl phoned through for finalisation, they said no - there is a proviso on the POA saying when deemed to have lost capability and although I had doctors reports, they said I have to wait for the fully registered POA and go through the whole process again. So I can't get any access to her accounts for 6-8 weeks. Does anyone know how long the care home will wait till the POA comes through and I can get access to her funds to pay for it?

My SiL mum was in the home for 8 months before the PoA was finalised. It was delayed due to errors and my SiL living abroad. The LA told her it was not unusual and they would get all the money once it was released to my Sil.there was no extra interest to pay. I would imagine this is very common as so many people refuse to give PoA until it is too late.

Thanks Query, that's reassuring to know.

Lovely man from Age UK has just been round to help me fill in the Attendance Allowance form. So glad to get some help from someone who knows what they are doing

Mil's final care costs were not paid by the council for 8 months- very embarrassing for my dh but the home was v used to it. Don't worry.