How should I be feeling?

Hi, I totally understand how u feel, my dad (83) has dementia and was at home managing ok. He recently had a stroke small brain bleed and he is now still in hospital and I'm loosing him daily from his recognition but he may physically recover from the stroke quite well. I totally feel I've lost my dad, but he has not died. His partner has now said she cannot manage him at home anymore, and I am not sure where will end up at the moment. His life quality is the most important thing , but I can see he has very little and it feels like if he was not here at all then it would be better. This is still all very raw for me but your story really hit a nerve.

Hi Gale. I am so sorry that your Dad is suffering from dementia too. This disease is so cruel with catastrophic results. My Dad is still alive and remains in the care home where he was placed last July. His condition remains the same. No better, but no worse either. He has had a few falls recently and when my family suggested a bed guard, they said "No" as it goes against his human rights. I think this is rubbish because surely they should be doing everything they can to protect him and a bed guard could help prevent him falling out of bed. I'm not suggesting they tie him up or cage him but surely prevention is better than cure?

My mother, now 86 has had a very bad chest infection and has not been to visit him for 6 weeks. He now believes she has died and we are keeping it from him. We have tried to explain that this is not the case and that she will be back to visit him when she is better.

I hope that your Dad recovers from his stroke but I can see why his partner cannot manage him at home anymore. I remember my Mum helping him with his shirt and as soon as she done it up, he did a fabulous impersonation of the Incredible Hulk and promptly ripped his shirt off, popping all the buttons! Mum said she went into the kitchen and said every swear word that came into her head! Mum is a very sophisticated lady and seldom swears so I know that this really got to her.

Dad seems to have his brain stuck in a time warp. He can remember his army number and also his DOB and often mentions his relatives who have died years ago and asks us if we have seen them lately, yet he cannot remember what he had for breakfast.

If you want to talk, scream, shout and yell, please dont be afraid to do so.

Hi Julie, thanks so much for updating on this site. Yes it's a very cruel disease and there seems to be very little support easily accessible for the like s of me and you. I'm still trying to come to terms with all the stroke stuff and now the hospital need him out, as they are no longer "Treating"him and they can't cope with the dementia at all. it's pretty shocking really.

This week has been tough, I'm trying to hold down a full time job, sort out the care side which means a private home I think as dad has his own home, and deal with my own feelings.

My dad also until the stroke could talk about his airforce days and old friends like it was yesterday, he had also started to become a bit inappropriate and incontinent at times which I'm assured is part of the illness but was very difficult to get my head round. now he can't string a sentence together and is totally incontinent so it's going to be very challenging to communicate with him.

He managed one day to cut all the cables off the tv and video as it was not working (he had been an electrical engineer in his day) but of course it was just not switched on. I can understand his partner not wanting to cope anymore at home, but it's so sad.

My husbands mother is Australia and she too has dementia and is most definitely stuck in a narrow time zone, but in her own world is quite happy most of the time she is 93!! And been in care for 3 yrs and could easily live to be 100.

I'm glad you say about screaming, I'm finding my car a good place to be alone and have a good scream and cry.

My salvation at present is our little grandchildren who light up my days when they are around..

Good luck with your dad

Hi Gale. I saw my Dad on Monday for the first time in 5 weeks (due to flooding and illness) and I was pleased to see that he had not worsened in that time. I saw him again on Friday (4 days later) and my family had a 6 month reveiw as this was due. Although Dad was not entirely co-herent, he did manage to say a couple of things like the nurse complained that "he had done it again" meaning he'd messed himself which upset him as the nurses clearly think he has no idea of what they say in front of him. I saw him again yesterday and he has deteriorated rapidly since Monday. He was crying, very distressed and frustrated. He has not wanted to leave his room (unlike before) and wont be shaved. He also has lost his hand-to-mouth coordination and needs to be fed. He is still eating very well though. When Mum left the room, I asked him "What's up Dad? You really are an unhappy bunny aren't you?" He gave my hand a gentle squeeze and said "I've not got long have I"? I couldn't lie and simply said "You go when your'e ready Dad". It broke my heart. I saw him trying to cross his legs and he couldn't, which frustrated him all the more. I told him Chelsea were top of the league but even that couldn't raise a smile. I have also noticed that his face doesn't light up anymore when we enter his room. I hate to see his torment and if I'm honest, I am kind of "wishing" that he passes away peacefully now.

Does that make me the ultimate BITCH?!

Hi,

No absolutely not, it's such distressing illness. Dad is still in hospital stroke symptoms have improved but this has enhanced the dementia (we were told it would) he does not know me I'm sure and now he can't string words together it's so difficult to communicate at all. He is totally incontinent and can't feed himself . they are trying to get him up and sitting in chair so that he does not succumb to pneumonia but it would be kinder for that to happen rather than what we are left with. I pray every time I leave the hospital for him to be taken quickly and preserve that scrap of dignity he and we have left. He looks at me as though I'm a total stranger it's heart breaking. II would not allow my cat to be in this state so it's so hard to see dad like it. I suppose if he keeps eating he could survive for many months even years but this is not life. 6 yrs ago he was still skiing on holiday. So I can totally get how you feel and do not blame you at all. The worrying thing is that this is going to happen to so many more people in the future and may be ME! I don't want this for my children.

Hi,

I totally understand how you feel working for Home Instead we deal with hundreds of cases like this. Many of our clients have been placed into a care home before by their loved ones as they simply cannot cope any more, the pain and upset of going to visit them in a different environment and those not knowing who you are must be the most heart breaking discomforting feeling. We believe in providing care services for people like your farther but in the comfort of their own home to try and allow their last few years to be as relaxed and as happy for both themselves and you. I can only try to relate to how hard it must be for you, of course it doesn't make you a bad person for wanting him to be at rest, we can only want the best for the people we care for, and not wanting to see them in pain is how anybody would feel. It’s hard seeing them in that state but you have to stay strong for them, deep down he knows who you are and visiting him when you can will be exactly what he needs- although at the time it may seem to get harder and he remembers less each time, but at least within yourself you have done everything you can and given him as much happiness and love as you can. Dementia is such a devastating illness and as you mentioned Gale it is going to affect thousands of more people and I can only hope and pray for the both of your fathers to be in pain no longer, as well as yourselves and families. My heart goes out to the both of you stay strong!

Hi julie my dad has just been diagnosed with dementia he is 77 I live with him and my mum,

I have sad and we found out about my dad before christmas I could not cope with it and I got myself all worked up, and since then I have been diagnosed with depression and I just cant get myself out of this,

ive been to see my doctor and she has given me mirtazapine 15mg im sleeping great but anxious during the day I have 2 brothers and a sister they say just dont get upset but they dont have to live with it and see the change I do

Hi Debbie, it is a very distressing illness especially when you are very close to the sufferer, so I can understand how anxious you feel. I would recommend that you get as much help as you can for your mum and yourself to have time out from the caring side as it can go on for along time especially as your dad is quite young and presumably still physically quite well. People don't understand that it's nots just abit of memory loss, it changes the whole personality and eventually robs them of there physical health as well. my dad is in a pitiful state now ,he has been diagnosed only since last year but has had increasing severity of symptoms for last 7 yrs, although we did not realise at the beginning.

I'm also struggling with anxiety and have been trying to reduce my work hours to enable me to cope better. It's a life changing situation for families, your siblings need to understand and help you to share the responsibility for your dad. Ask for help don'tt try to do it all alone it will drive you insane!!

Contact from our local Alzheimer's groups helped me to understand the illness better.

Thanks gale

Hi Debbie. I am so sorry to hear about your Dad. Dementia is such a cruel and devastating condition for the sufferer and the families. Gale is right - it is a life changing condition for all concerned, especially for the family. Mum turned 86 last week and this is a massive thing for her to have to cope with. She tries to go to see Dad everyday if she can. His home is just a ten minute walk from where she lives but with the recent weather, etc, this has become a tedious task for her. She hasn't been well herself and was unable to go for three weeks. Dad asked my sister and I if Mum had died and were we keeping it from him?? Recently my brother-in-law died and when we explained to him what happened, Dad asked "Did you have him put down"? You see - we had a dog years ago which had the same name as Bro-in-law. Dad is continuing to deteriorate and has now become virtually bed-bound with no coordination and last sunday, we thought he was going to die. His breathing became shallow, then rapid then it stopped for a minute (sleep aponea) then back to shallow again. He had a chest infection and this had clearly made him poorly and was given antibiotics. He is better but we know that this is no life for him and it's so unfair. Religion-wise, I am agnostic (one of the not-sures) but I am of the opinion that if the Big Man does exist, either take Dad and relieve him of his suffering or if He doesn't yet want him then "Give him back to us" as he was so we can appreciate him a bit longer. All this living in limbo-land is having an affect on the entire family and it's not fair to Dad or us.

Did you do as Gale suggested? If so, did it help? Thinking of You and Gale. And Gemma - thank you for your kind words.

Julie xx

Hi Julie,

So sad your dad has deteriorated so much and I am with you totally on the religious note. I have religious friends who keep saying its gods will and mercy that we still have dad, BUT WE DONT HAVE DAD, we have a very vulnerable old person now at the mercy of our social system. I'm trying to reduce my working hours to help look after him more, we are still waiting on a care home decision so he stays in hospital, staff are fine but they want him out as they know he will not get any better. I am so sad and it's making me depressed too.

The one thing is I'm going to try hard not to allow this to happen to my children, making a living will with absolute description of what I don't want to be like, and then perhaps by the time it's me we will have moved on in this country to allow dignified end of life care for this type of illness, as we have with Cancer..

Heartfelt regards to you all

Totally with you all the way Gale! My sister is a catholic and she believe's it lies in God's hands, etc and that's fine by me if that is what she is comfortable with. However, I don't share those views. Euthanasia is a sore subject, often arising in discussions, etc and I too have been very pro-euthanasia but now Dad IS in such a situation, I'm not sure about that anymore.

I hope you do manage to reduce your working hours as you come across as totally selfless - wanting to do everything you can for your Dad. I worked for a nursery (children, not plants) and the manager was completely heartless and made life difficult for me. I was going through the menopause at the same time and as she was younger than me, it was obvious her parents were very well (as mine once were). I did state that she could be in my position in ten years time and I just hope that she gets shown more respect and understanding than what has been shown to me. It's true I didn't want to be there because I wanted to comfort Mum.Having to listen to the kids crying cos they didn't get the blue cup seemed trivial to me....

My sister and I (not the religious one) both agree that we don't want to put our children through any of this if my husband or I were to end up like Dad. I used to joke about it and say "For Heaven's sake - shoot me" but I now realise this is no joke at all. I have a daughter aged 26 and a son aged 23. They don't see Grandad anymore but I keep them updated and they are old enough for me to "tell them like it is". I dont believe in pussyfooting around and have asked the nurses caring for Dad to be straight with me and NOT to try and sugar-coat it. I too hope that by the time we are getting to that stage, the law will have changed and allow a dignified end of life. I don't really want a trip to Switzerland.

I just hope that your Dad is comfortable and I too send my heartfelt regards to you. Keep taking the medication for depression - it actually does help.

Julie x

HI all.

I am sad to say that Dad passed away on 1st July. He looked so peaceful when I saw him in the Chapel of Rest. I know his death wasn't unexpected but it has knocked me completely sideways! I really thought I was prepared but I so was NOT....! The raw emotions that my family and I are feeling are ones I never even knew I had.

He ended up completely bed-ridden which of course was no life at all. I cannot help feeling that his death is a release for him. We have his funeral to prepare for and we plan to give him a send off to be proud of as not only will this be his last journey but possibly the last favour we will do for him...

RIP Dad. My hero, idol, legend, friend and Guiding Star. xxx