Feeling guilty...and resentful...and completely overwhelmed

[Bessieb]

My parents have now been in a CH for 3 months...moved there after my Dad was admitted to hospital with a UTI and it became apparent that both of them had deteriorated to a point that they were really not coping at home. They were 150 miles away from me and the two years prior to them moving to a CH had been pretty difficult with me constantly driving up and down the motorway to sort out one crisis or another.

It was very stressful making the decision to move them but I had this vision that when they moved to the CH - lovely place, couples suite, 10 minutes down the road from me, specialist dementia care - that everything would be much less stressful and we could enjoy spending time together again. But it's just not been like that.
They haven't settled. They constantly ask me when they are leaving and it is the topic of conversation at every visit - I just can't distract them. They talk about houses they lived in many years ago though which I know is common with Alzheimers sufferers and often think they are in a hotel or pub. My Dad has no insight into his medical problems and is insistent they would manage fine at home even though he now needs 24 hour care. Plus he's had this delusion that students are living in their house and asks me about it incessantly. And he's passed this onto my Mum who also is becoming obsessed with the idea. I try to reassure them as I don't want them upset but it comes up every visit and I just can't get them off the subject. And if I don't visit that day because I can't face the same conversations again and again they phone me...at least a couple of times day...sometimes more to ask about it again.
I'm just worn down by the constant reassurance I'm giving and having to be cheerful and upbeat with them all the time whilst answering the same questions...and although I'm trying to use all the tips about distraction and vague and compassionate communication I just hate not being able to have a truthful and rational conversation with them. I'm just not very good at it - and the visits aren't the enjoyable ones I was hoping for.
I The GP / SW say I've made the right decision and it's in their best interests..as do the rest of my family (extended family..I'm an only child) and I know rationally that they are safe and well cared for now but when they aren't settling it's really hard to stay confident. I suppose I can only hope they settle soon.
And I hate dealing with the finances....paranoid I've done all the calculations wrong for the CH fees planning. And completely overwhelmed at the prospect of selling their house - particularly as I can't discuss it with them.
I'm trying not to let the situation impact my children and husband but today I just feel completely resentful of the whole situation and most awfully feel quite resentful of them. Even though I know it's not their fault. Isn't that dreadful . I'm trying my best to make the right decisions and be sensible and rational about it all but today just don't feel there is light at the end of the tunnel.

Gosh that was a long rant..and I don't really have any questions ...just looking for others who are in similar situations and understand. I find it very lonely having to make decisions without any siblings for support....and to constantly have to be upbeat for everyone when I feel fairly rubbish about it all. Another sleepless night!

 

[Kevinl]

"most awfully feel quite resentful of them. Even though I know it's not their fault. Isn't that dreadful"
No, that's it just a simple NO it isn't dreadful, none of us signed up for it, none of us want to be here, but we are; the constant question, the hospital appointments, the paperwork, wiping bums, mopping up pee, finding the latest things that have been hidden and all the rest sure we all feel resentful in or way or another.
I'd rather be going to work tomorrow, I liked my job and got pretty well paid but I have to do 24/7 at home for £64 a week, I used to go to the pub after work (happy days) last time we wet she wet herself and I'm only 59>
Nothing more to say really "Feeling guilty...and resentful...and completely overwhelmed" about sums it up.
K

 

[Stresshead]

I hear you Bessieb !! I'm an only child looking after my elderly father and sometimes the loneliness cripples me. I wish I had siblings to help me with what is truly an overwhelming and completely consuming responsibility.

You have done the right thing for your parents as they are safe and being looked after. Maybe you could do with trying to reduce your visits to try and get them used to their new environment and maybe even ( hard as it would be ) not answer the phone every time they ring.

I am slowly coming to learn that there has to be some sort of self preservation on this long journey. You have a life and a family too.

Don't be too hard on yourself. Allow yourself to feel the way that you do, it's a rubbish situation. Walk away from it for a day or two (your parents are safe) and then you can come back to it with a clearer head.

I know it's easier said than done ...........I need to take my own advice !!

I wish you strength xx


Sent from my iPhone using Talking Point

 

[Delphie]

Hi Bessie,

Lots of us here understand. Like you, I'm an only child so everything is down to me, and it can feel overwhelming.

My first bit of advice is to echo what stresshead said about cutting down on the visits. It took my mum longer than 3 months to settle and in retrospect my frequent visits weren't helping. Nor did my phone calls. In fact it took an honest carer to open my eyes. I called, the carer picked up the phone, I asked for my mum, she sighed... I asked what the matter was and she said that my mum was extremely unsettled after talking to me and that this happened every time. I know in your case it's your parents calling you, so maybe get the care home to help out by temporarily removing their 'broken' phone. Or let the calls go to voicemail. You'll feel guilty! But then you feel guilty anyway.

As far as the finances, yup, I've hit a few brick walls, but now I've been a Deputy for my mum and an aunt for a few years, to be honest I just get on with it, and if anyone thinks they can do a better job they're very welcome to, but, strangely, there aren't any takers for this massive, time consuming responsibility that pays zero per hour. What I'm trying to say is do your best, and if (IF) you make an error then guess what, everyone else does too. In fact the biggest pain as far as the Deputyships is the pretty much constant mopping up of other people's messes. The DWP, LAs, HMRC, various banks and other businesses, all these regularly make mistakes. My 'job' seems to be to spot them and spend time chasing up solutions. And I'm the only one not getting paid!

Lastly, if you really can't stand dealing with the finances then you don't have to. The Court of Protection can appoint a Deputy to do that for them.

But I'd say hang on in there because things are likely to settle down once the house is sold and your parents get more used to where they are. It's early days and you're still carrying the stress of the last two years on your shoulders.

 

[looviloo]

I understand your feelings completely . Dad moved to a care home about 5 months ago, and for a long, long time I had to give constant reassurances which I found very stressful and draining. The same questions, over and over, about the house / the car / why he was in the care home etc etc. I had thought that the move to the care home, which was brought about by dad having a serious fall, would make life easier when in fact it made my life very, very hard for several months.

What I can say is, that in my dad's case it has got easier, and the questions are getting less often and have less strength of purpose behind them. I long ago stopped trying to reason with dad, and my answers have become shorter and vaguer. I visit less than I was doing (I'm aiming for once a week) and I don't phone dad directly anymore, since he was having difficulty using the phone and it was causing distress. All these things have helped me; I suppose I've put personal boundaries in place, to protect my own wellbeing. But the biggest change has been in dad himself... he is very slowly settling, and hopefully that is what will happen with your parents too. It takes time. Much longer than I first imagined. But we're getting there, so much so that when I saw him yesterday he remarked that it was cosy in the care home over winter, like last year... a bitter-sweet remark since he was actually in his old (cold) house last winter.

It's time for you to gather your strength and look after yourself a little more, in the knowledge that your parents are in the best place for them, their health and safety, and that it's ok for you to live your own life too. Good luck... and hugs x

 

[Tiller Girl]

Be kind to yourself !


If we're honest we all feel resentful it's only natural. And then we feel guilty ! It's just a vicious circle. So be kind to yourself , you're doing the best you can and probably better than some!

I'd also go with what others are saying about less contact. They need time to settle in and when you visit, it reminds them all over again.

There's no telling with this dementia, they forget what you want them to remember and then obsess about stuff you want them to forget!!

 

[Bessieb]

Thank you all. It is good to know that I am not alone and that it's not just me who is facing all this stuff (not that I would wish it on anyone!)
I am going to cut down my visits as everyone suggests. It's tough as with them now only 10 mins down the road it's tempting to pop in and check on them and I would love to have an hour nice chat and coffee. Particularly with my Mum who I know is struggling with my Dad's irrationality (and her own!).
But I can't help more than I am. I can't cure the Alzheimers and I need to preserve my own sanity to support them as much as I can.
I had another ranty phone call from my Dad this morning announcing he's going home and questioning everything again. Definintely time to let it go to answerphone as it's the same conversations over and over and I can't reassure them any more than I have been. His delusions are getting more elaborate (now the students are vandalising their house and a neighbour has set up a jewellery shop in it ?!?) .I need the care home to deal with it and to be fair they are being great. Had a lovely chat with one of the carers this morning who reassured me that they are not always unhappy and that everyone believes they are in the right place.
Thanks again all ....and hugs to you all with all the challenges you also face.

 

[missmarple]

I agree with other posters you have to put boundaries in place/ grow an extra 3 layers of skin/ remove yourself emotionally to a certain extent.
I cope by not seeing my Dad as a parent anymore. I have lost both my parents: my mum in 2 days 21 years ago (she had a stroke) and now Dad, dead (as a parent anyway) from a thousand cuts dealt him by AD. My father is someone I have a responsibility to, to make sure he is safe and cared for and as I can't be his carer (I would have gone mad, but it took me 2 years of counselling to accept this) I manage his carers, finances and all his affairs and support my brother who lives with him.
Sometimes too much empathy can drag you under.
Of course it is not at all easy, and part of it for me is the fear that I am going to see worse, we're just hitting incontinence now.
I agree with the OP who said fewer visits and phone calls may be necessary now to help you recoup a little and rebuild your strength. Good luck.

 

[missmarple]

Cross posts! I am glad you have decided to go less. Your Dad is in a loop with his current preoccupations, it will pass eventually.

 

[irishmanc]

We are in very similar situations, BessieB. I too am an only child and have both parents in a nursing home. They struggled for 2 years to live by themselves and ended up in the nursing home after a period in hospital when it became obvious to social services that they could no longer cope living alone. The only real difference in our positions is that I am living in another country to them. This is both good and bad - they had no choice but to settle in at the nursing home but I felt so guilty that I couldn't visit them more often. In retrospect, this was a good thing early on as they settled quicker than they might have done otherwise.
Dad settled virtually straightaway as his dementia was so advanced that he was unaware that he was in a different place. Mum is more aware and was very unsettled initially. She was having what were auditory hallucinations - hearing people that weren't there and convinced that people from outside the home would break in and beat up my Dad. This passed in time as she got used to being there and she no longer mentions going home, even during my visits. I think that the advice to visit less is good but hard to do without the guilt monster with which we are all familiar. It will take some time for the memories of their home to fade but they certainly will. Try to take it easy on yourself and try also to be glad that you have no siblings to fall out with (as I have heard that many do at such times). Take comfort from the fact that your parents are safe and well looked after by the sound of it and try to ease yourself back into your own life.

 

[Bessieb]

Yes you are all of course absolutely right. It's very hard but today is the day that I'm going to start being less and their beck and call. I'm not going to visit today and I'm going to answer the phone once to them and not after that. I'll know they are safe and I can't make them happy so that will have to be that.
I feel dreadful for my Mum as I know she is on the end of my Dad's rantings and delusions but they don't want to be separated, do have happy times together and the CH are trying to manage this by getting them to have a bit of time apart and space from each other so it's that best that can be done.

This disease really is dreadful. I never imagined I would have to consider being less close to my parents as they got older..purely from a self-preservation perspective. I can only hope that as time passes the will settle and become less agitated and it can all feel a bit more contented and calm again. But I know that AD is unpredictable and who knows how it will progress.