Having guilt problems again

[petromany]

I have recently come back from a holiday with my daughter, whilst my hub by was in respite. On my return I was told by ch that he had broken 3 windows and put his knee through an outside gate. By way of explanation, the ch told me that he was constantly trying to get out, was very agitated and they had to resort to medication to calm him, which wasn't easy. They, the pro's have said that he is quite complex and needs one to one care and watched 24 hrs. Of course, I cannot do this at home, and they are suggesting that now is the time for residential care.

The mhn is coming in tomorrow as ss have referred him back to her and the social worker attached to her team. A continuing health care plan is going to be applied for but I am wondering what this will involve. Hubby is very volatile and yet, amazingly, can still put on a front. I dread tomorrow when she has to fill in the form with us together, as I have kept everything from him and he is unaware what is likely to happen. His behaviour is very challenging and yet he is still very strong and able,altho his mind has almost gone, and his recognition of family members is zilch.

I am so upset, don't really want to go down this path, but I know deep down I cannt cope for much longer, but there is still that little spark there , and I have a guilt trip. He is not eating very well now, and I fear incontinence is not very far away.

He had a bad day this week when he couldn't handle going to the toilet , Dr had prescribed some medication for his blocked bowel, and it was everywhere.

Where do I go from here, I cry myself to sleep most nights and feel selfish, thinking about myself and not him. We have been married 54 yrs and it is a heartbreaking,end

for both.. Sorry to burden e veryone I know you all have your own problems. There doesn't seem to be that much help out there !!!!

 

[turmoil]

Hi petromany

I can fully understand how you feel, I am racked with guilt as I have had to admit that my Dads behaviour is not acceptable and had to make the call to the professionals for help, not sure what to expect or what to do! Like you I am dreading answering the questions about Dad infront of him as he is in complete denial, not just about the frontal lobe dementia and vas dementia but his 80yrs too, he says he is in his 60's, infact he took all his 80th birthday cards down the day after his birthday 24/07, but kept the fathers day cards up from June lol.

I feel I am totally betraying him, and I know he is going to explode with anger but what else can we do, we want our relatives cared for and safe,but boy it is eating me away. Good luck to you and hope all goes well.

Turmoil

 

[rajahh]

I am waiting for a phone call to say there is a place for my husband in the nursing home I have chosen.

I am dreading it. I understand totally where you are at the moment.

My husband is not aggressive at all, neither is he volatile, he is incontinent, and he is terminally ill with prostate cancer.

My own health is breaking down and I know I cannot care for him much longer so rather than have a crisis I am arranging what I feel is a gentle caring home for him.

Yes I keep thinking Oh I could manage for another week or two. but in myheart I know I cannot.

I feel for you it truly is one of the hardest decisions carers have to make.

Jeannette

 

[zeeeb]

Don't feel so bad, you have done so much. And you can't be expected to do it forever. It is very hard to make that decision, but in the long run it will be for the best, you will have a chance to look after and nurture yourself for a while, which you deserve.

Please don't feel guilty, there is nothing for you to be guilty for. If and when he does go into full time care, you will be able to be more for him because you won't be so exhausted by the daily grind, you'll be able to just visit him like a friend and have a cup of tea with him, and spend time talking to him so he can enjoy your company, rather than just being the "carer", you can go back to being his friend.

As I've said a million times, this disease is very complex and often requires a team of people to do the caring required, it is often far to much to expect of one individual.

 

[sistermillicent]

I hope you don't mind someone who is a bit outside this coming to this thread - I am not a full time carer for mum and I do not feel guilty when she goes into respite. I feel grief a lot of the time but that is about mum being ill and what a dreadful end of life and how much more living she could have done.

You all have nothing to feel guilty about but a huge amount to feel very sad about, please don't think for a minute that any of you have done less than the very best you can, you are all heros. I just want you to know that.

 

[Tigers15]

Guilty? Are we not innocent until proven guilty? I know there is a world of difference between a guilty act and that feeling of guilt, even when we have done nothing.

My dad was discharged from hospital last November: it was first agreed that he would go by ambulance and the family would stay away for a few days. Dad refused to leave the hospital (he thought he was down the road at his lady friend's home) - to cut a long story short, due to his behaviour they were threatening to section him. I therefore took the decision to take him myself under the guise that we were going for a drive. Since that day my sister has blamed me for everything and we no longer speak.

Dad is now settled in his 'guest house', can't understand why I can't book a room and stay. I know deep inside that I did do the right thing by dad, but often the guilty thoughts of doubt creep in - could we have looked after him at home? Is this the right nursing home? Was my sister right? etc. etc. I deal with this by remembering that he would have been a risk not only to himself, but also to others. Plus he wasn't actually happy at home and he couldn't bear to be in the house, not since my mum died.

Alzheimer's is a terrible, terrible illness / disease which seems to drive families apart. As a family we dealt with my mum's death - it pulled us together. As a family we dealt with our older sister's death (cancer) - it pulled us closer together. Alzheimer's has driven the family apart. Guilt, blame, grief - what a combination of feelings to deal with!!

Sorry, got a bit carried away talking about me, but I guess you need to understand a little about me to be able to have some faith in what I say: Those feelings of guilt will from time to time raise their ugly heads; however provided that you have truly considered and focused what is best for your dad or your mum, your wife or your husband, whoever it is: then you have done nothing to feel guilty about. The circumstances are not your fault. You are the one who has had to deal with circumstances and any changes to the circumstances as best you can. All we can do is to do our best, our very, very best.

 

[Witzend]

Hi petromany

I can fully understand how you feel, I am racked with guilt as I have had to admit that my Dads behaviour is not acceptable and had to make the call to the professionals for help, not sure what to expect or what to do! Like you I am dreading answering the questions about Dad infront of him as he is in complete denial, not just about the frontal lobe dementia and vas dementia but his 80yrs too, he says he is in his 60's, infact he took all his 80th birthday cards down the day after his birthday 24/07, but kept the fathers day cards up from June lol.

I feel I am totally betraying him, and I know he is going to explode with anger but what else can we do, we want our relatives cared for and safe,but boy it is eating me away. Good luck to you and hope all goes well.

Turmoil

How dreadful it is that you both have to discuss your spouse in front of them, warts and all. There is so much talk of treating people with dignity and respect, and yet you are supposed to enumerate their failings to the SW, while they are listening - it is no wonder people get angry, particularly when (as so often) sufferers are completely unaware - or can't accept or remember that there is anything wrong with them.

For all your sakes I do hope these interviews are conducted with the maximum sensitivity and the least possible distress, anger or humiliation. I well remember being completely unable to ever be at all explicit about my mother's condition in front of anyone at all - she would be so angry and upset and feel that I was both a liar and her enemy.

Fingers firmly Xed for you both.

 

[petromany]

On a guilt trip again

Thank you to everyone who responded to my posting. Today, which I was dreading, went better tha I expected, The mhn came and we completed the NHS continuing Healthcare checklist without hub by being involved, took absolutely ages, and this is only the first step. evidently he has to become involved and has to "sign" the document. He cant even sign his name now, so what good is this, and why make him upset unnecessarily. Does anyone know whether I can do this as I do have POA with my daughter. However, I have now taken the first step, feeling dreadful, don't know whether I can do this or not, feel absolutely exhausted even thinking about it Now I have to do the footwork and find a suitable place that will be able to manage his behaviour problems, and is within the costing !! So it just goes on and on and on ....... have to go getting upset now. Thanks to all of you and take care.

 

[Tigers15]

Thank you to everyone who responded to my posting. Today, which I was dreading, went better tha I expected, The mhn came and we completed the NHS continuing Healthcare checklist without hub by being involved, took absolutely ages, and this is only the first step. evidently he has to become involved and has to "sign" the document. He cant even sign his name now, so what good is this, and why make him upset unnecessarily. Does anyone know whether I can do this as I do have POA with my daughter. However, I have now taken the first step, feeling dreadful, don't know whether I can do this or not, feel absolutely exhausted even thinking about it Now I have to do the footwork and find a suitable place that will be able to manage his behaviour problems, and is within the costing !! So it just goes on and on and on ....... have to go getting upset now. Thanks to all of you and take care.

I don't understand why hubby has to sign. My dad has had discharge assessments, care plan assessments and reviews and NHS continuing care plan assessment. He was visited by the specialist elderly persons psychiatrist, or the social worker or the NHS rep just for them to check on his mental capacity, but at no stage of any of these assessments or reviews did dad have to sign anything.

Good luck with finding a suitable place, hopefully one that isn't too far away therefore making visiting easier. Take care and let us know how you get on.

 

[petromany]

Thanks fpr giving me some info regarding signing etc., I have spent the whole day practically on trying to find a nh that will take him, quite an impossible task as most do not have staff that can give 1 to 1 attendance, and also they turned me down due to his behaviour problems, so it looks as though I cant get him in for respite either. Wont give up, will keep trying . I must admit it is getting to me a bit now, and I am usually quite an upbeat and bright person. Have to get onto the Valium, ha ha !!!!!

 

[Jo1958]

Goodness my heart goes out to you, this was the point that upset me most I think about the whole process, not only the decision but the soleless work involved in finding the right place at the same time as the form filling for funding, awful.

I looked at places that I wouldn't have put a dead hamster in to be looked after, others that left me feeling unclean and wretched, some that were lovely for nice little old ladies, the whole sorry business took weeks until the NHS funding was through and I was able to talk to the person in charge at the PCT (changed now to something else) as they had the current knowledge of nursing homes and which was appropriate and they thought a good place for hubby. Their third or fourth suggestion was the right place, it was out of area but the right place is the right place and it is working well.

Nothing that I can say will make this part of your journey any easier but you have my sincere sympathy and support as it is truly a dismal process to go through for you all, I hope that it doesn't take all your time and energy and you can enjoy some family time these holidays.
With kindest regards from Jo

 

[2jays]

With the risk of being moderated I offer my thoughts

I have found that this "need to involve" the person with dementia who thinks they "have nothing wrong with them" is a cop out by "those who are here to help"

Please excuse the bitter, twisted thoughts I have of "those who are here to help"

My heart too goes out to you.

What I have learned.

What does your gut feeling tell you? Follow your gut instinct

This caring lark drags you down, so much so, you are grateful to anyone "who is there" and is listening to you..... then you find out, they "listen" but..... If you haven't asked the "right question" ...... They won't let on

My thoughts

Contact Alzheimer's support. They know the questions to ask and will be so helpful

My further thoughts

You will feel nothing you do is right
But if you do nothing..... If your gut instinct tells you ..... That's the right thing to do

Garbled. Maybe not helpful. Just my thoughts.

 

[angecmc]

I totally agree with 2jays regarding "need to involve" the dementia sufferer. It is the same old story, nobody considers how difficult it is for the carer to discuss their family members behaviour problems in front of them, even though we know they will forget after a while all these conversations. The carer does not forget, the feelings of guilt and betrayal these conversations bring. I hated every hospital appointment where i had to tell tales on my Mums behaviour in front of her and had to look at her dismayed face. It is time this procedure was changed.

Ange