how do i carry on caring ????

[mick_wild]

my dad, who is 84, has had vascular dimentia for the last two years, i gave up a good job 2 years ago to look after him. he is being treated at a memory clinic and has been on aricept for the last 18 months or so. recently his condition has gotten worse, especially over the last 4 months. he has been verbaly abusive, seriously argumentative and his cognative reasoning has dwindled to nothing. i am his only carer, with no siblings to share the caring role. i have a young family of my own, very little income to support them and i am increasingly becoming more and more stressed, upset and more stressed. i feel i can no loger do everything i do for my dad. i love him so much but feel he is a burden, i feel ashamed of admiting it but that is how i feel. i have so many guilty thoughts every day and feel really low and desperate for a break, but feel so bad when i leave him. we are always arguing and i cant seem to keep calm in situations and always end up crying on my way home. i am feeling fed up, stressed, emotional and angry with him. to the outside world he seems a normal 84 year old man. he hides his condition very well from other people and i feel he is taking the mickey out of me.

any comments welcome good or bad.

 

[Logan]

Hello mick, So sorry that you are in the situation which you find yourself with. I sympathetise. My hubby also looks good to his medics and outside world (and I have had a particularly difficult day today). I hope that your Dad's medics can appreciate the abuse which you are receiving. I know all about that. I am sure that there will be other TPers along soon who have been in your situation as a carer and will be able to give you some constructive ideas. My hubby has yet to receive a diagnosis - he has small vessel disease and it is likely that a blackout 13 years ago caused a mini stroke, but medics cautious about that. Lx

 

[DeborahBlythe]

Dear Mick Wild, I'm sorry you are feeling so stressed. I'm glad though that you have found Talking Point. Does your father have any support via Social Services?
Has your father had a community care assessment recently, and have you yourself had a carer's assessment? http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=131
Please keep posting as I am sure you will find TP helpful.
Kind regards Deborah

 

[CaPattinson]

Hi Mick, it's understandable to feel bad. Being the sole carer and having a young family must be agonisinly hard. Social services - someone must be there to help, to help arrange respite. Someone who knows more than I do will probably be along soon to advise you, better than I can. Its so difficult if you have no other family to help you. I really feel for you, I hope you can sort some respite and help soon. You're not alone, thinking of you, take care. xxx

 

[ellejay]

Hi Mick, I am so sad for you, I'm 63 ,my family are grown and I feel resentful that my life is revolving round my mothers needs. Phone Social Services, tell them you are at breaking point.Cry,beg whatever it takes. Don't try to brave.
I hope I don't offend you, but in my opinion your first priority is to your children and your partner.They have to come first. You are not superhuman and you can't do everything on your own.
You are entitled to a normal life. Don't ever think you are not.Good Luck Lin x

 

[Nan2seven]

Dear mick wild - my husband was also diagnosed with vascular dementia two years ago and I know all about the arguments, the verbal abuse and total lack of logic.

Does your dad not have a Social Worker? Following Brian's diagnosis he was offered two days a week at a local Day Centre all set up by the SW, plus, because I had reached a point where I felt I desperately needed a break from caring, a week's respite which meant that he went into a local care home (found and funded by Social Services and Brian paying one week's pension towards the cost). This respite week came round once in every two months, but I could choose how long a break at any one time so long as it did not exceed six weeks in any one year.

Brian was not prescribed anything and I had assumed from that that vascular dementia was not in any way treatable. His sister is on Aricept, but she has Alzheimer's.

Do ring the SW tomorrow and let him/her know how you are feeling. Tell it like it is. It just gets harder and harder and you need time for yourself and for your young family. Sadly if you don't let them know you are struggling, they will leave you to get on with it.

Do make that 'phone call tomorrow morning - and then, if you feel like it, let us know how you get on.

Love, Nan XXX

 

[parkerdart]

Dear Mick Wild-

I have VaD and sometimes feel bad about making an answer to a carer because I am the one on the other side. My heart goes so sorry for your stress and sadness. I have 2 sons and hate the fact that unless they get lucky, they will be probably having to go thru what your Dad is putting you thru even though it is probably not at all what he would have wanted for any of you. I wish I was smarter about what to say to you because I can hear your pain. I know I would say to my sons that they need to at all of the times put themselves first. As a parent, you know that is what you would want for your child and I think that is what your Dad would want for you if it was in his brain to think the right way again. This is a very merciless disease. My son told me today that I am going to be a grandma again. His 2nd child - my 2nd grandchild. The baby will be here in Sept. and I am so happy but so much sad too because how will I be then for Lucas or for the baby or for me. He certainly needs to care for those babies BEFORE worrying about me! Like I said - it is a merciless disease. I think we all always have more questions than answers. That is why the TP is a good place to ask questions. Please take good care of you and know it is okay to need a break, it is okay to be upset, it is okay to love your Dad and to HATE what the disease has taken away from you. Have a Blessed Day. Vickie

 

[chucky]

hi mick

nan2seven is right. Like you my dad has dementia.My mum had a stroke which left her paralysed and brain damaged.It has been 5long years and very very difficult. I tried to do it all myself and wouldnt accept help because i felt that i had failed my parents by handing them over to someone else to care for them. How wrong was i! Eventually two and a half years ago i hit a brick wall, i broke down and was so distressed i phoned social services and begged for help. They were very good and helped me enormously. I think this would be a good starting point for you, beg, cry, do what you have to and make them know you need help.Sadly this disease causes major upset to the lives of all involved and it doesnt get any easier. You have made a start so keep moving forward and dont beat yourself up about feeling angry or guilty most of us do but it gets easier to handle when you have the help you need. Good luck.

 

[concerned1947]

Hi mick
I understand what you are going through as by hb who is 66 has mixed dementia and for the past two years has been extremely difficult to care for at times when he is very agitated and angry. He no longer has any logic so it is impossible to have a dicussion. It is pointless arguing as it causes conflict and makes it worse. I too am often in tears (in the bathroom) as it does no good for him to see me in tears as he cannot understand. Unfortunately I have nowhere to escape to. On a positive note I have found the Admiral Nurse very supportive and there for me and she recently spoke up for me with the medical team when I needed support.

 

[Purrdy]

Hi Mick, I felt exactly the same as you a couple of months back and TG I've got family to fall back on. Having said that I live next door to mum so after a week or so my siblings think that everything is ok and their lives go back to normal, leaving me to it once again. Now I have been on to different support groups and read lots of posts and I can honestly say I feel so much better, I'm not alone in all this, there are pople out there that are going the same thing and understand.
Have you got time to see your GP for a chat, its a start.

Sending Big hugs

 

[mick_wild]

thank you to you all

thanks to all the support that everyone has sent to me. it makes a difference to know that there are other people out there who are in the same situation as me. i went to dads today as usual he didnt seem to remenber anything of yesterday. we do have a support worker from a team called merit, who does help with the emotional side of things and give me advice but the day to day living with looking after dad does take its toll on me and my family. i have been to mine and dads doctors and made them aware that i am a carer, i have had the carers assesment and we are trying to sort things out, but dad doesnt want anyone in his house. i do have LPA for dad, pretty much most things in order but i feel im dammed if i do and dammed if i dont with him.
i will keep going with the hope it all gets better soon. thank to you all for your comments.

 

[hazytron]

Hi Mick

Please do not feel alone. Having just returned from my nightly visit to my Mum, she lives across the road from myself,I feel completely drained from her barrage of abuse.

She has no sense of reason or logic, has been in bed all day, has not taken any medication, is as large as life, where as, I am tired having worked all day.

Tomorrow, she may have forgotten all about tonight, I hope so.

In the mean time I have switched off my phone, I am likely to receive calls through out the night. I hate doing this, for fear she really does have an emergency.

My sanity is at stake so the phone will remain switched off all night.

Without TP I would not cope at all!

Let us hope tomorrow will be a better day.

Hazel

 

[ellejay]

Hi Mick, Glad you are getting some help. One point I will make, my mum is like your dad in that she doesn't want strangers in the house.Well, sadly we can't always have what we want, and that includes dementia sufferers.I try to make mum happy, but there are limits I have to set. Take Care Lin x

 

[sunny]

You say you have a young family? How much support do you get from your partner in the caring role? and are you getting all the financial benefits regarding your Dad's care? There can be a lot of stress in the caring role but added to that financial stress and life can be very miserable.

 

[mick_wild]

You say you have a young family? How much support do you get from your partner in the caring role? and are you getting all the financial benefits regarding your Dad's care? There can be a lot of stress in the caring role but added to that financial stress and life can be very miserable.

the support i get from my wife is second to non, my wife looks after our 4 year old son and has got medical difficulties herself. i do get income support with carers allowance premium and i get carers allowance also, yeah its not alot to live on, but hey money isn't eveything, but it does help sometimes.

 

[Jameela]

Mick,

Just wanted to say hi and that I think you are amazing. I have a young son (14 months) and unfortunately, when my mum was diagnosed with AZ (which might, after all, be VD anyway - nobody's sure) in November last year, I was very clear in my own mind that I could not, and would not, become her carer. I know that seems selfish to many, but I realised that to do it, I would have had to give up my job and probably my family too. (As she would have had to come and live with or near us, which would have involved moving her 150 miles from the area she's lived in all her life. Like you, I have no siblings or other family members who could help. And my GP said that having a dementia sufferer in the same house as a child was a recipe for the child protection unit getting involved...) That was a sacrifice I wasn't prepared to make. So I am in awe of you looking after your dad yourself, and making the sacrifice that I wasn't selfless enough to make myself.

Take care of yourself and your little lad, and your partner (who sounds amazing too!)

J

 

[Christin]

Hello Mick Wild,

You might find this link useful, take a look when you have a moment.

http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=119

For sometime we didn't understand what was going on, and thought that FIL might be taking the mick, having a joke etc. I once asked him if he was joking and he just walked away from me. Now, we believe he often just said the first thing that came into his mind, without thinking how much it hurt others. If he was well he would not say the things he does.

Very best wishes to you.