Please can i talk to someone?

[juliejo]

I posted a while ago on here but have been very poorly myself (i have Fibromyalgia and also ME.

My dear father who is now 84 has had Vascular Dementia and many other serious health problems for over 15 years or so now and has declined very fast since Christmas.
He goes into respite every 4 weeks for a week and also two days at at day care centre to give mum a very much needed break.

My mum is now very poorly herself with high blood pressure and also Crohns disease and also COPD and is finding it so hard now to manage dad but will not under any circumstance let dad go into permanant care. The time is coming when we all have to make that decision as i can't care for either of them and have no-one else to help either.

What i an trying to say is when do you make that decision with a parent that they need full time care as the guilt is too much to bare for both mum and myself.

Dad also keeps saying "please dont put me away and sits crying". Mum can't do that to him and it would break her heart to do this.

However i know that mum is the one that something is going to happen to shortly as she can't go on much longer.
I can't bare the thought of them being seperated either.

They are also in a warden controlled flat which is upstairs and mum can hardly walk up them now let alone get dad down the stairs etc.

Mum has another lady from social services coming to see her this Thursday and if my health allows i want to be there too.

Social services are trying to cut dads respite again and we are sick and fed up of appealing and getting nowhere. The stress of all this is making the whole family so ill and tearing us all apart.

I am sat with tears streaming down my face writing this as just don't know what to do for the best.
Thanks for reading Julie x

 

[simonmonty]

Hello Julie I'm so sorry your going through such emotional hell at this moment. Have you talked to your local alzheimer's society for more advice or support as you all obviously need lots of help and advice. How you all have coped for so long with your server heath problems is beyond me.

Have you talked to age concern to see if they can offer any help or advice or cross roads. You are in one hell of a dilemma and the only out come might be permanent care for your father. I know its so hard a reality to face but permanent care might be the only option for your mothers sake, yours and your fathers.

Your not alone we have all been through similar experiences with facing having to let a loved one go into care home. Its the hardest thing to do but some time it's the only one given you have run out of options.

You need to make sure there are no more options and talk to social services. It would be a lot more cheaper to give you the help to care for your father in the community rather then permanent care. I'm sure there will be lots more people here soon to give you lots more advice or just to listen.
Just remenber your father will still have a home he can still come home to stay now and then. Tell him the care home will be like a second home.

 

[Vonny]

Dear Julie,

I think it's time someone sat down with your mum and gave her the facts. She is killing herself, and then who will look after her husband?

It is only natural for people to want to care for their loved ones at home - my dad was the same. However, it's a draining task for a healthy, fit, young person!

I agree that someone from the Alzheimer's Society would be a good bet to talk to your mum. They are detached from the situation but have a good understanding of what caring entails. If you could make your mum understand that she wouldn't be giving up caring, she'd be doing it in a different way is all. She could give your dad quality care when she visited if he was in a CH. She'd be in better health herself and more able to give him real quality time. Not only that, it would be safer for your dad to be in a secure, comfortable home with carers on tap.

There would be no need to tell your dad it was a permanent arrangement. Many people here have got over that hurdle by saying the sufferer was going "on holiday to a hotel", and gradually as they got used to it, there was less need to fabricate a story.

I saw my dad turn from a vigorous, healthy, fit and strong man to a shrunken, shuffling old man in less than a year. He cared for my mum 24/7 and although he had help from my sister and I, he took on the bulk of the caring because he felt it was his job.

Ask to speak to the head of your Social Services. It is a disgrace that they are trying to cut respite. Could you get your mum and dad's doctor to back up your requests for help?

Please continue to post here, it is such a good place to unburden yourself and you will get many different points of view which may help you. xx

 

[juliejo]

A huge thankyou Simon and Vonny,
I have been sat here reading through alot of post's as well.

I to think the time has come that my dear dad is going to have to go into full time care. Either that or my mum will go before he does and i am not sitting back any longer now and keeping quiet. I have had a good think since posting and i know that i shall have to sit mum down and talk to her on her own first.

Vonny we have had people from the AZ to talk with mum but she just makes out she can cope but i am now going to ring them again tomorrow morning for some advice and support again and tell them the full situation.

We have also gone as far as to write to the Manager of social services but get nowhere and as i am so ill myself i have to let it go or i will be no use to no-one. What i will say is mums Gp is willing to back her but again she's in denial.

The thing is although dad is rapidly declining i honestly think you would have to make him go kicking and screaming as he is adamant he is not going into full time care. He is still aware of who we are. He is now just shuffling about and falling all the time as well which is causing other problems. Last week he feel and has his hand strapped up and also his knee bandaged.

Simon i will also get in touch with age concern as well to see if they can do anymore.

What i havent said is dad is permanantly cathiterised and is able to manage that but lately he is getting very muddled with that as well. Mum has to empty his night bag at 5 o'clock each morning and then has to wash dad.

My dad is also extremely religious and is constantly telling mum Jesus and also the Virgin Mary are moving about in the room and talking to him. He constantly sits in his chair praying most of the day which is driving mum mad and that's an awful thing to say as he is so loving and caring and has never said a cross word to anyone. His faith we think is what keeps him going.

Sorry for the long reply but i feel alot better having offloaded and talked to you tonight and can i thankyou once again both of you.
I will keep in touch and let you know how things go. Julie.

 

[FifiMo]

Would it be possible perhaps to get your mum to agree to a "trial period" in full time care or ane extended period of respite, so that she can see the benefits both to herself and your dad. You don't say whether your dad has any awareness of time e.g. when he goes into respite every 4 weeks is he aware of when the week is up or could he perhaps be told that he is not going into permanent care but just a prolonged period of respite?

It could be perhaps that you have to "engineer" things with the help of the other professionals in order to get the best result for everyone.

I wish you well with whatever you decide. These things are never easy to deal with, particularly when someone has dificulties with the decisions which need to be made.

Kind regards

Fiona

 

[simonmonty]

Hello Julie again.

I'm really glad we have helped you. You said your dad is very religious have you spoken to your local church vicar or priest ? My be some help from them might help in persuading your father that it is best for him to go into care to reassure him.

I know how you and your mother feel. I have spent many a time crying my eyes out on here. Sleepless nights worrying about what will happen. How my mum would cope.

I became ill the last few months before my mum went into care. But i just struggled on never bothered going to the doctor so became even more ill. My voice became very hoarse and i could hardly speak.

It was only when my mum was finally in care that i finally went to the doctor and found out i had cancer of the vocal cords and because i had left it so long it had become advanced.

I was worrying more about my mum then myself. I'm recovering now was very lucky to not to had a laryngectomy or lost my own life. So i know how you feel.

It will be hard for your mother and father to accept. But once you and others explain the benefits it will hopefully make the transition easier. and please do keep us informed how you get on were always hear for you and your mum.

 

[Nanak]

Hi Julie
Just want to send you ((((hugs)))) and tell you that you will get all the help and support on here that you need.
I can't believe the hurdles some of you are trying to get over. You are all an inspiration.
Kim
Mum 12,500 miles away

 

[lin1]

Hello Julie.

Im one of the night owls here.

I think it's dreadful that SS want 2 cut down on respite care, when I here things like this it makes my blood boil

we carers are often faced with battling when we are least able 2 cope with fighting.
Some1 above mentioned crossroads (now called crossroads care) not sure if they in your area but worth checking out.
It's a charity that gives a few hrs a week respite, the same person comes, at same time day(s)s each week,they are trained.
this will give your mum a little break in the week . so worth looking in2. I have a wonderful lady who comes twice a week for a few hrs.

wondering if you dad is suffering from Depression as you mentioned he cries a lot. so maybe get gp in 2 discuss it, if your dad is already on anti depressants maybe the ones he is on are not working for your dad and need 2 be changed .
try age concern they may be able 2 help talk 2 your mum bout your dad going in2 full time care,
((((((julie))))))
it's a hug

 

[juliejo]

Thankyou all again for you wonderful and caring support.
I truly appreciate it.
I feel so much better today for talking and also am starting to get my head around alot of things too.

Simon i am so so sorry to read how ill you became but do understand where you are coming from. My Gp is always telling me i must look after myself but when i have a good day with my illness i tend to overdo it and help mum and dad out as i just have to be there for them. I have spent the past 14 hours asleep with my ME as with all that happened yesterday it drains me of all energy and i feel like i have the flu and have to to to bed.

Can i just say that dad is on the correct medication, antidepressants, Lorazepam and so many other drugs too many to mention. Dad also has an auto-immune disease as well.

His meds are checked regualarly.

Simon you mentioned dad being religious here and for that i can't thankyou enough for what you have mentioned to me.
A priest visits dad each week to give him communion and also he has a very close relationship with a Nun who has become like family to dad. I shall think about maybe one of them having a quiet word with dad about full time care as i know he will listen and take alot more notice of them.

I am ringing mum later on while dad is asleep and see how she is coping.

Can i also say that regarding Social services it becoming a nightmare. They just keep cutting costs where we are. They don't see what mum has to do with dad during the night as well and she dosn't get any sleep at all and cat naps throughout the day while dads asleep.

I am so much to think about my heads spinning right now and feeling poorly again so best leave off for now and pop back later if thats ok. Julie.

 

[Bristolbelle]

Double room???

Several care homes actually provide double rooms, as both your parents have health issues I wondered if this might not be a good solution?
Can I also say that I think your dad nmight well be depressed as most people I know who are very religious (and seeing a Priest everyday certainly confirms that)find thir faioth gioves them the strength to face otherwise difficult decisions. Unless it is the dementia of course :S

 

[Angela J]

Hi, my dad believes that he is in hospital, not a nursing home. I tend to go along with this as I think he would become distressed if I said this was a care home.

It sounds like it's time for you and your mum to let someone else take over your dad's care now so you can concentrate on your own health needs. You sound like a true saint to me. I hope things get better for you all very soon. Angela

 

[Vonny]

I am so much to think about my heads spinning right now and feeling poorly again so best leave off for now and pop back later if thats ok. Julie.

Dear Julie, pop on and off whenever you are able. Caring is exhausting work, and supporting carers can be just as exhausting. You are going through a lot at the moment, try to be kind to yourself. We'll be here for you whenever you are able to talk xx