Dad's in respite, feeling bad...

[JMU]

Dad has gone into respite for a week, the same care home as last time, which he loved, meaning I've got some breathing space to consider things. Yesterday was another hard day- I posted in the morning that he woke up more confused than usual and things didn't improve. Eventually my temper frayed and I shouted at him (not proud of myself) and the next thing is two policeman are knocking on the door as someone passing heard and called them.
Actually it was a relief. My first thought was at last- perhaps someone will take notice! I still haven't heard from social services. I told the police so, all that is happening and the absolute zero communication I am getting from anyone official- they started talking to me about the case worker and the police official involved in his case as if I knew what they were talking about and I told them I don't know. I don't know any of these people! And I am trying to move things on because I am aware I have reached the end of my tether and it's like banging my head against a wall! They were totally understanding and agreed that perhaps a report from them would help kick things into gear.
I have avoided thinking of it because it sounds selfish, but there's no way that he can come back home. I have to go back to work and he really can't be left alone any more. Recently I have been getting reports from a neighbour in her mid-eighties, who tells me she tries to keep an eye on him when I'm not there! The other neighbours couldn't care less. In fact I get abuse from them for mistreating him! They make me just want to pack up and move away!
Sorry, I'm not in a good place right now. It feels like now I've made this momentous decision but I can't act on it. I can't enjoy this time alone, and now I'm questioning what I do next. Without him. I'm not even sure I know who I am, I have been caring for him so long. My tastes in films, music, food, always have been tempered by his. This house is full of him. Then there is outside- I have no social life (all close friends live many miles away), I never go out, I have never even been able to do overtime at work before, and suddenly I am to presented with hours and hours in each day to fill. That scares me! I feel ashamed for thinking it.

 

[CollegeGirl]

Please don't feel ashamed, there is nothing to be ashamed about. You have done your absolute utmost and now you have simply reached the end of your tether and cannot go on. I admire you for recognising that; it's a very difficult thing to admit.

Could you contact the home/social services and get the respite extended to give you longer to catch your breath before you have to start organising? I feel you need time to wind down, first.

Well done and big hugs x

 

[nerak]

Poor you!BIG HUG! will be there soon AND am still in limbo as to what this all means?

Mum has dementia doing more and more mad things on a list to be seen may take a year the nurses are calling but havnt yet??????????

I can no longer cope there is NOBODY except me to care and selfish NO i want my life back!

Im 40 going on a hundred!

My friends have STOPPED calling on a friday for a glass of wine

Been here 4yrs in those years:

Bad accident slipped and had whiplash,head injury and tendons torn in right arm.

A year later a burst appendix which nearly killed me.

after recovering from that a break in

then my mum fell and broke her arm

AND NOW FOR TEH GRAND FINAL

She has dementia(thankyou god)

I have to leave and live again I love my mum but I CANT HELP HER ANYMORE

I just cant do it im human and want to get out of this BUBBLE of fear and anger

I want her safe and clean and looked after

I want her to have company her own age until she dosnt know.

Please do not feel bad my back went yesterday because of her and the mess the stress will kill me.

She wont get enough help from SS or have anyone here at night to lock up watch her.

I dread this coming have nightmares everynight about her screaming my name as they force her into a home.

I have to be realistic unless someone else comes and looks after her 24/7 a home is the only option.

Maybe we are selfish that as much as this disease STINKS we want them around us for as long as possible

If my mum is left on her own here she will die

I really feel for you and dread this coming to me soon.

Big Hug!!!!!!!xx

 

[lilysmybabypup]

My heart goes out to you, I completely understand your emotions. My dad, 86, has had AD for 8 years, although he lived with Mum, 82, as main carer and I gave up work some time ago to support her. Our situations are not really the same but the frustrations, anger, and bewilderment are the same.
I have always thought that a diagnosis of any dementia should have a dedicated case manager who stays for the entire process from go to woe, and woe is literal.
I'm in Australia and it was only after Dad was admitted to hospital 6 weeks ago that we had the input of a SW, and she was extremely young and of little help or support, not just from inexperience but from a complete lack of real support. We have floundered from Day 1 and it's only because I have advocated, researched and spent hours on the phone that we had any information or help at all.
Back to you, please feel no shame, I am telling you the truth, the exhaustion, utter hopelessness, life-altering nature of dementia should never be underestimated. You will find many kindred spirits here. So, again, I implore you to forgive yourself for all the supposed wrongdoing, we have all been there.
I hope you can now get some desperately needed help, you have done the right thing, respite. Good for you, it is hard to accept. dad was going into respite from hospital, but then we knew Mum had her own health issues, and even if I moved in there to help, she would still do too much and we would lose her before Dad! Now he has been in a nursing home for a week and a half and I am still without any time or joy, it's a half hour drive away, much longer at peak travel time. He is very lost and scared, missing our voices and I am trying to spend every day there to comfort him. But at least Mum is resting, although she said she is now lying awake worrying about how he is at night.
There are simply no easy answers, but you must first forgive yourself, you clearly love your dad very much and have put your life on hold. You are a wonderful daughter, a selfish daughter would not be here feeling guilt and shame. Take some time during respite to sort through your emotions, we all have a breaking point, and there is no shame in realising that. I know. I am in perpetual guilt and grief right now, torn between my mum's and my dad's wellbeing, wanting him home so desperately, as well as between needing my life back and being with Dad to comfort him.
I hope you can rest and find what will work for you, it is such a pervading disease and you have done so well. Again, forgive yourself.

Stephanie, xxx

 

[zeeeb]

Don't feel guilty. You've done so much for him, the most important thing with care homes and Alzheimer's is knowing when to hold 'em, and knowing when to fold 'em.

Try to think of it as a new beginning. He will get a full team of people providing the care he needs, and you will be able to start something new. Think of it as an opportunity to find a new hobby, make a new friend, to do something for yourself.

It will have a whole set of its own challenges, but hopefully it will be liberating at the same time. You need not feel guilty for enjoying yourself when you have the opportunity.

 

[JMU]

Well it seems it was an interesting night at the care home. The phone rang several times at 3am last night, but rang off before I could get to it. This morning it turns out it was the care home ringing. Dad had got out via a fire escape and was missing for more than an hour. The police were involved in the search for him and he was eventually found on a local housing estate (not a nice one either), saying he was going home. I don't think he meant here!
I rang social services this morning and finally got a call back! It seems dad has yet another case worker, and she has arranged a meeting at the care home on Thursday afternoon. I told her I'm not happy with the lack of communication and she said that we would have to 'find things out together' as she was new on the case! I also told her I don't think he can come back home now. She mentioned possibly extending his respite. That is if the care home will keep him- they're not equipped for wanderers. I hope he will settle. He loved it there last time and had forgotten about me within a day or two. I don't really want him to go anywhere else. I mentioned the possibility of the place where he goes to day care and got a "hmm, well there are good points and bad points, but there are everywhere." A comment to inspire confidence! She also mentioned my sister and whether she would like to be present at the meeting. My response was along the lines of "No thank you." It seems I'm more angry with her than I thought, but there's no way after everything I have gone through that I am letting her step in and take the glory at the last minute! If I have to do this alone then I will do!
I feel a bit better now I've actually been able to speak to someone. And as the care home manager said the 'escape' will add more fuel to my argument.