Painful transition

[City Claire]

Hello

I feel a bit bad about posting this because mine obviously isn't a difficult situation compared with many and it's a very long post which I've already copped out of putting on once (but I did save it in Word in case!):

I've just registered (at work as I don't have access at home). I'm sure I'm in a familiar situation and I'm sorry in advance as I'm going to go on at length I think. My Dad has vascular dementia and is 85. He also has angina and lung cancer in one lung. Mum (who is 80) has been more than amazing and has coped at home for years after Dad was diagnosed, only with morning carers and sitters from social services fairly recently - which was probably my fault as I think I was not really acknowledging the seriousness/difficulty of their situation until she ended up having bad nose bleeds because of the stress. We got in touch with Soc Servs and the local Alz Soc then.

We had a couple of abortive attempts at day respite care - so Mum never really had a break - although we all went on holiday together sometimes and I've been visiting most weekends since the nose bleeds happened (I'm about 50 miles away/am an only child with no other close family - married without kids). Anyway, sorry, I'm losing the the thread. For a while recently Dad's mobility has got worse (we had been going out for at least a few hours and having lunch etc. at the weekend up until a couple of months ago) and he has become incontinent - Mum was given some support by the CPN and social services with this but we came to the crunch 4 weeks ago, after Dad had fallen one night the week before when Mum couldn't get him to go to bed so he was up on his own and Mum had to call an ambulance to help lift him up and then I spent the weekend with them and we had to get a wheelchair and twilight nurses in to help get Dad to bed.

On the Monday Dad's consultant had him admitted as an emergency to an acute 'ward' (it's got carpet and separate rooms and a TV lounge and dining room so it doesn't feel like a ward in some ways) which deals with elderly people with mental health problems - as Mum and I had both called her because we felt the situation was dangerous for Mum and Dad when no one else was there. It's been very hard to bear for both Mum and I (I think my guilt levels can probably be seen in the length of my explanation), but most for Mum of course - we are a very close family.

But Dad thankfully is not visibly distressed (though I'm sure he realizes on some level what's going on and I've tried to explain it's cos Mum can't cope and that we'll always love him and visit him - and part of me screams 'Judas' at myself every time I do this!). We've visited him quite a bit (about twice a week) - tho' I think Mum is still scared of going on her own so hasn't done so yet and I can understand that (I'm scared too of course and veer between that and being desperate to see Dad all the time to check is being looked after OK) - and had some laughs and smiles, but he has got frailer I think and had some knocks where he has fallen. Also Dad was sick and got low on fluids, so was transferred to another hosp nearby for assessment for a day and a bit last week as they thought he might have an ulcer (because of the aspirin he normally takes) and he was very dehydrated. Luckily I was with Mum anyway that day as we were going to meet the social worker, so we could go to see him a couple of times that day and in the evening of the next.

I suppose I have gone through all the scenarios everyone does in these situations - part of me just wants to give up work and look after Dad all the time, but I don't think I could do it physically (I'm not sure about mentally, my marriage/own life surviving it, paying the mortgage all that), we'd need at least one other person there the whole time to help lift Dad, if not 2 as my back is a bit dodgy and I suppose truthfully/selfishly I haven't really considered moving to where Mum and Dad live, so the geography wouldn't currently work. (And Mum seems to be feeling that this is the time to accept Dad needs more than we can do at their home, altho' now he's not at home she's not sleeping cos of that instead of becos' of all the worries of him being at home of course ... I hope she can find a way to adjust and that I can help her, I am seeing her every weekend and talking on the phone often, she is at a local Alz Soc lunch today I hope. We went to a concert together not long after Dad had gone into hosp - it was awful not having him there with us, I had tears streaming down my face when they sang one of his favourite duets.)

Well if anyone made it to the end - I'm not sure why I've said all that, when what I really wanted to ask for was advice I suppose. I'm finding it hard to get through the emotional turmoil and be practical - we've had one 'team' meeting with the consultant and social worker and OT etc. and one meeting with the social worker about starting to look into finding an EMI nursing home for Dad - as he can't stay where he is long term, but they don't seem to be rushing us too much (and have said they could still support Mum at home if that’s what she wanted) - altho' the consultant did seem to say if an EMI nursing place came up Dad would have to go there in the interim at least wherever it was in the county. I've read quite alot of information, got one of those checklists of questions to ask prospective care homes from soc servs and I know I should read the Continuing Care info' and I have started detailing financial info' and gather we might need to see a financial adviser to find out the best way to sort out finances. We've been more or less told there is only one place which will suit Dad which is near enough for Mum to visit on her own (she doesn’t drive) and I am trying to gear myself up to visit it. Are there any practical tips anyone can give me or are there obvious things I should be doing that I’m not? I don't feel I'm being very accurate in my request ... but any advice/info' is appreciated ... including 'get your a***e in gear' or similar.

 

[Kriss]

Hello Claire

don't feel bad about making such a lengthy post - when you've been holding it all together for so long you need to get as much as possible out.

It sounds as though your Mum is doing just fine - her main difficulty is not being able to drive and get herself to visit as often as she might like to. I wonder if there is anyone who could take/go with her sometimes when you're not able to? Even if its only a lift from a neighbour if she's brave enough to go in on her own.

Its impossible for you to do any more than you are from such a distance - my Aunt is in a home 50 miles away so I know how hard it can be so don't batter yourself over it. Yes, you can't help but think "what if I gave up work, what if I moved closer, couldn't he live with us..." etc but you've got to keep grounded over this and recognise that Dad is a poorly man. When we lost my Dad it was because of his heart not the AD just as our GP had predicted. That was probably the kindest thing that could have happened however its no consolation when you're left with such a void in your life.

Keep focused on supporting Mum and making the most of any time you get to share with Dad. Get the finances organised - it will keep your mind busy, and go visit the home(s) that may be offered. Fate has a nasty way of taking over when you are least prepared and the helplessness of Dad being shifted at a moments notice when you may not have had time to mentally prepare yourself will only make it seem even worse (pretty difficult to imagine anything worse but thats how it can be).

Keep posting - you'll have lots of encouragement and we may even make you smile once in a while.

Kriss

 

[barraf]

Dear Claire

You seem to be following the right road, in as much you have the GP, Consultant, Social Sevices, OT etc all involved and apparently working well together.

The business of giving up work or moving nearer, only you can decide, but I would think very deeply and consider every prospect carefully before committing yourself and family to anything so drastic.

Certainly you should make a move on the financial position, and also visit any homes that are mooted as suitable. In respect of the homes try to call unannounced to get an unrehearsed view.

Reading your post it sounds as though you are trying to put off the evil day, but I'm afraid it won't go away so the sooner you tackle the problem the better you will feel once you have started.

Hope that doesn't sound too harsh but we all have been or are going through similar scenarios. And experience tells us that the only way to expiate the guilt feelings (which we all suffer from) is to do the best we can.

Keep posting, and don't worry about the length or content, it helps to get it out in the open.

Good luck
Barraf

 

[Sheila]

Hi Claire and welcome to TP. Sorry to hear things are so tough for you and your family. I agree with the others, think carefully, discuss every option and take it a day at a time. Enlist all the help you can from the professionals, they carry a lot of clout when it comes to getting things done so use this to help you get the help your Mum and Dad need. Before making any decisions about moving etc, discuss all your feelings with your partner, this is not something that can be undone, so be ultra sure it is the right thing to do. You have to consider your own lives too. If your Dad settles, your Mum will get used to it in time, she will be able to see him and have quality time with him instead of being so worried and tired. This too is something to be discussed, as is which home. I found if you went in the morning, unannounced, you could tell quite a bit by the smell and how harrassed the staff looked as to the standard of care and the staff ratios. If your Mum decides she cannot bear to have him go into a home, then the professionals need to get a care package in place before your Dad comes home, don't let them fob you off on this one, make sure it's ready to roll the day they need it and that regular respite weeks are built in to it. Good luck, love She. XX

 

[Jude]

Dear Claire,

I'm very sorry to hear your sad news and I can really appreciate and identify with all of your worries and anxieties at this time. These stem from all the sudden upheaval in your family lives and the awful knowledge that nothing is ever going to be the same again. In many ways, the first stage is the worst, since so many things have to be done when you are in a vunerable state and an emotional turmoil.

It's easy to say that you should try not to feel guilty, but somehow we all seem to feel this way some of the time. I'm sure we all feel that we 'should' have done more or could have prevented the situation. The sad fact is that we can't and this makes one feel out of control and helpless. Guilt is a horrible emotion to deal with but it is unfounded. Nothing you could have said or done could have altered the present situation.

I hope all goes well in the immediate future and don't hesitate to post as much and as often as you need.

Thinking of you.

Jude

 

[City Claire]

Thank you

Thank you so much everyone for your replies and good wishes it was wonderful to see so many (I'm going to print them out later), sorry I haven't replied earlier - yes I'm sure I've been trying to put off going to see a 'home' so I will make that the top priority (after seeing Dad and checking how he is doing). I was so pleased to find the forum as I've been finding it hard to talk to anyone apart from my Mum and husband without blubbing (well I have been blubbing quite alot with them too, less with Mum as I think we are both trying not to upset each other too much), and it's so helpful to know people on here have gone through similar situations. I'm a bit of an impatient type so I have to make myself read through all the bumpf I've been given properly, rather than just skim it. I do feel fortunate in some ways as in terms of the professionals we do seem to have a better situation than some. Mum had one of Dad's ex-morning carers take her to see Dad last week, which was good apart from unfortunately that was when he wasn't so well so she didn't recognize him when she first saw him and was really upset by that. But we've seen him looking better since fortunately. And she's got a local volunteer hosptial visit taxi service in the village who are trying to fit in taking her up to see Dad when they go up to the general hospital nearby, you pay but it's reasonable - and she's going to go up to see Dad on her own on Thursday.

Thanks again so much, better go and do some work ...

 

[Geraldine]

Hi Claire

After you have had your first visit go back shorlty after unannounced and see how welcome you are made. Its also a good idea to have a written list of questions and make sure you refer to them.

Geraldine

 

[Jude]

Dear Claire,

I'm so glad to know that you feel reassured by all the positive responses and advice. TP is a great forum and really makes you realise that you aren't struggling with your problems alone - there are lots of carers 'out there' sharing your worries and concerns as well.

Good luck with the Home search. Do let us know how you go.

Jude

 

[City Claire]

Thanks Jude, I've been looking around the forum and saw the wonderful pics of Bali - I gather you are probably off quite soon, I hope you have a wonderful time!

All good wishes

Claire