Heart Broken

[jennifer1967]

expressing your feelings is what the forum is for. i think you need to go back to the doctor. it is very hard to see but if your dad really doesnt want any help or medical investigations, there is nothing we can do. that is a very hard part and heartbreaking. have you got admiral nurses you could phone just to talk through your feelings and how to cope orthe alz. soc. support line. i think you need to talk things through and then see what else could be done.

 

[leny connery]

I just want to make him be okay, I just want him to be okay
I can't do anything, I can only imagine how is feelings to openly speak about death to me which is something he always protected me from.
I'm crying here, I need to go.


I am sorry I am using this forum as a brain dump but I don't know where else to turn, I'm powerless to save or help the one person who always helped me and that really, really hurts.

we all, what we can do, is to send you our love and encourage you to love yourself too in facing the inevitable. To say death comes to everyone of us sounds trite, and you love and need him so much it hurts to think about it let alone to accept it, but you must. talk to the GP if he or she is a good listener. If not please talk to Admiral nurse..you can absolutely cry and scream and tell them your heart ache and you will be listened to and be given help and advice and sympathi with no judgement. please?

 

[Aqua Marina]

I'm so sorry to see what you're both going thru, a lot of it is similar to my Dad, he has the same mixed dementia. He stopped eating and Mirtazapine was a miracle drug for us coz it gave him an appetite. He eats well now but is still losing weight, was 6ft and now 10 stones, was normally 16-18 stones decades ago.

I dreaded Dad going into a nursing home and am surprised he's accepted it. He fell at home in December and had a long stay in hospital where he enjoyed the rest and being looked after, proper meals.

I am currently starting to feel very worn down and have no time to myself to even keep my house clean as my Mum now has the same diagnosis and does nothing for herself.

What I'm trying to say is that you shouldn't rule out your Dad going into care, my Dad has not got agitated like he used to at home as he has no issues to worry about now he doesn't have to look after my Mum and try to stay on top of any letters, phone calls, perceived issues.

There is also the safety aspect, Dad disconnected the pipe in the bathroom sink and water came thru downstairs, he over pressurised the gas boiler twice in 2 months too.

I know my Dad is kept safe and looked after, his food and drink monitored, he watches the comings and goings in his lounge and speaks to everyone in his line of sight.

It is so wearing trying to look after them and organise medical appointments, prescriptions, food, laundry, especially as Mum just sits in a chair and watches tv, I would be far happier if she went into care, I would be less bad tempered about her changing her mind to go somewhere once I've arrived to pick her up or not being dressed or ready when she had said on the fone that she was.

I'm at breaking point as I deserve to have some enrichment and quality of life too. I rarely had a day I didnt have to be with my parents for the last 18mths.

It's not unkind to have your parent looked after by professionals. I have one being looked after and all the stress I'm under is from trying to be there for my mum who lives alone now with dementia.

You sound far more stressed than me and you really need to look after yourself so that you are able to support your Dad.
My Dad also told me to make sure I had a happy life coz his is nearly over, we must be thankful we are able to have these conversations, no matter if they don't make perfect sense at times or are hard to hear.

 

[Kcs]

My head is all over the place and I've cried non stop since finding out.


My father has had memory issues for many years, but always been in denial.
He's got lost at times and I always knew something was wrong, but put it down to many horrible events we suffered in our lives.


He has been formally diagnosed with Vascular Dementia and Alzheimers disease today following a brain scan.
He's likely in mid stage.


He looked at me when he was told and I saw the fear in his eyes - I feel broken, scared, like I don't want to be here anymore, if I'm honest.
I can't lose him, I have tears running down my face as I write this.

I'm scared for him, I'm scared for me.
I can't cope with thinking I'm going to watch my dad be taken away from me piece of piece.


I'm numb.

Why does this evil disease even exist, why him, he'd do anything for anyone.

So now I know I can't hide anymore that maybe it was stress, or because he was having a bad day or because he is aging.


I don't know what to say.. :'(


I love you so much dad :'(

Your post brought me to tears, and I like you, cry frequently. It is so so hard watching a beloved parent slowly drift away and to feel so helpless in the process. Some days are totally unpredictable and can be emotionally exhausting, and although they are fewer, some days have glimpses of light and as someone else wrote “bittersweet “ moments. Those are the days that keep me going and give me strength to continue to do what I can.

 

[Heartbrokenbear]

Thank you to all of you, for the replies, and to staff on this site for reaching out to me over the last few days.

I appreciate you all, and all the kindness you show.

I saw Dad on Saturday, and he seemed very disoriented, when I called him half hour before to say I'd be over he was like oh okay then when I got there he appeared to forget I had told him I was coming.


When we go shopping, he always wants the same thing, he now refuses to try anything different, I've tried to buy him treats like cake or chocolate, and once he'd love some cake but now he says no, very bluntly.

I hate the unknown, that I don't even know how long we have, I asked the GP the last time we went in and she said she couldn't say what stage he was in but I believe we are in mid stage, although this varies.

Me and Dad use to chat every night on the phone for hours, but now he doesn't want to, he says he's busy, or too tired but I know both these are a distraction and he just doesn't want any interaction.


When we go for a coffee, he sits and stares into thin air, and when I try to engage he gives short replies.

He had hearing aids fitted a short time ago after I got him seen urgently, given his diagnosis he got bumped up the waiting list but Dad says they don't work, yet he said they did when at the hospital, and swears that he needs a computer which they've not given him to use them.
So he refuses to wear them at all, and to be honest the hospital staff watched him struggle to put the aid in due to severe tremors he just couldn't do it for ages.

I get burned out, as sometimes I feel like maybe he's just being moody with me but I do know it's his illness deep down but it's such a struggle.

The other week when he stayed with me he came into my bedroom at 5am and said when are we going out, I was like Dad it's 5am we never go out this time and he said come on its 5am we go out now, yet he went back to bed after I told him no and never mentioned it since, I don't think he remembers himself doing it.

He refuses to allow anyone, not even me to put his clothes in his washing machine, I've tried and he literally got angry and turned it off at the wall, his place was hoovered and he hated it, said leave it all.

I sit up, most nights like now, it's almost 2am, and think one day, the day is going to come that either the Police, hospital or someone else is going to call me and tell me he's dead, and I can't think beyond that, because I can't see a life without him in mine.


I look back now, and see signs I missed, that he was unwell.
The tremors, the forgetting, getting lost, going missing, shutting himself away.

My meds have been increased, but I'm having some awful side effects with the increased dose, but I'm putting up with them because I must.

Social Services were notified about my worsening mental health a few weeks back, and I was told that I should have a needs assessment, but Dad doesn't want referrals, his GP has said they can't refer without his consent.


Unfortunately where I am they don't have any admiral nurses, I've called the helpline a fair few times, and had conversations but my area they only have one admiral nurses and she works full time in a care home so doesn't do anything on the outside.


What scares me is my own emotions/thoughts.


He still has a bad chest, will monitor it for another few days and if still hasn't improved I have to get him seen.

I think I am going to approach the Fortisips again with the GP, they refused to issue them last time as he said he was fine with solids and swallowing, but he lied, he has a swallowing issue. He's choked 3 times in 6 weeks and that's just the times I know of.


Luckily Dad is in sheltered housing so there are on site staff 24 hours.

Thank you again to each and every one of you, I hope you all have a good week.


Aqua sending you my best for your dad and mum.

Kcs it's a awful horrible cruel disease, we will fight on.

 

[Heartbrokenbear]

Spent the week with Dad, took him away for a few days and starting to see vast changes in him.


He didn't want to eat very much at all, he didn't really want anything to drink either I noticed.


He's lost weight, I can tell, he must be 7 stone or somewhere around there.


I didn't mention it before but Dad had a positive FIT test around a year ago and decided he didn't want any further investigations, but I'm growing concerned he may have cancer and/or heart failure.

He can't carry a small shopping bag now without getting out of breathe quickly, something I didn't know he was this bad and we walked less than half a mile earlier and he was coughing and breathless, as he has been all week.
He wants to sleep but says he doesn't sleep yet I found him sleeping most days, he'd nodded off.


Yesterday he barely ate and when I gave him food he said he struggled to eat it and didn't feel like eating, and had to force it down.


The GP did check he had capacity when they told him he's FIT was positive, but he declined 2ww urgent cancer referral - but seeing the last week how he is, I'm concerned he had something else going on and maybe hiding some symptoms from me.

Tonight isn't a good night for me, I'm trying to think past this but it's not looking good, lack of food / drink is going down some dodgy ground.


Finally, he had a outburst of anger a few days ago, I told him he needed to lock his window because it was on ground floor and was wide open for anyone to climb in, he said no one would and I said they could, and please close it, he got really angry, slammed it and walked out the accommodation, but went no further than the end of the path, as I think he knew he'd get lost.


I guess I'm going to have to try and get him to the GP again, but that's going to be easier said than done as he always says now when I mention it there's nothing they can do for him and he isn't having anymore tests / being pulled about with whatever time he has left.

My heads a mess, just not sure how to process all of it.


On a positive I donated to Alzheimers this week by buying some tshirts they had for sale, I hope it helps.


Have a good look weekend