Feeling guilty

[Weary]

I really have just about had enough now. My FIL was diagnoised with vascular dimentia which we dealt with for 5 years before he died 2 years ago and just before he was diagnoised my MIL who was his wife was diagnoised with alzheimers. This nightmare has been going on for around 7 years now. We did everything we could to keep them both in their home by organsing cleaners, carers, doing their shopping, shunting back and forth to hundreds of doctors hosptial and clinic appointments over the years with both of them. We had to take over all their financial affairs which resulted in a nightmare as we didnt have power of attorney for either of them, the paperwork fills 2 huge boxes and the form filling and phone calls are almost on a daily basis. On top of all that we live about 50 miles away so visitng on a weekly basis has been a strain emotionally and financially as we are struggling.

MIL has just gone into a nursing home as she is in the latter stages and had a fall which resulted in her breaking a leg. She is skelletal but apart from all that seemingly as strong as an ox. I dread the weekly visits now as there is no recognition of anything and conversation is one sided and if she does respond its utter nonsence. Am i a really bad person to want it to end so that we can have our lives back? we now have the nightmare of having to sell her house resulting in more paperwork phone calls and worry......

I love my MIL dearly but she went a good few years back and all that is left is this unhappy thing for which we are still having to deal with all this stuff for which takes over our life and makes us both miserable. All I can see is more years of hell...

Sorry for the rant just venting as these are things i cant say to anyone

 

[SueShell]

I totally empathize. On my bad days I pray that Mum is taken during the night, but I know thats not going to happen because apart from the AD she's as fit as a flea. On the other hand I'm seriously fed up with my own life ebbing away in front of my eyes with the same old chores for Mum day after day, the same questions day after day, bored out my skull, becoming envious of friends going off on lovely holidays and having normal lives, whist I'm stuck on this merry-go-round I can't get off of until my Mum dies. Sounds wicked, but I've had enough now, but could have many more years of this yet to come!! Even the thought fills me with horror.

 

[Feline]

I really have just about had enough now. My FIL was diagnoised with vascular dimentia which we dealt with for 5 years before he died 2 years ago and just before he was diagnoised my MIL who was his wife was diagnoised with alzheimers. This nightmare has been going on for around 7 years now. We did everything we could to keep them both in their home by organsing cleaners, carers, doing their shopping, shunting back and forth to hundreds of doctors hosptial and clinic appointments over the years with both of them. We had to take over all their financial affairs which resulted in a nightmare as we didnt have power of attorney for either of them, the paperwork fills 2 huge boxes and the form filling and phone calls are almost on a daily basis. On top of all that we live about 50 miles away so visitng on a weekly basis has been a strain emotionally and financially as we are struggling.

MIL has just gone into a nursing home as she is in the latter stages and had a fall which resulted in her breaking a leg. She is skelletal but apart from all that seemingly as strong as an ox. I dread the weekly visits now as there is no recognition of anything and conversation is one sided and if she does respond its utter nonsence. Am i a really bad person to want it to end so that we can have our lives back? we now have the nightmare of having to sell her house resulting in more paperwork phone calls and worry......

I love my MIL dearly but she went a good few years back and all that is left is this unhappy thing for which we are still having to deal with all this stuff for which takes over our life and makes us both miserable. All I can see is more years of hell...

Sorry for the rant just venting as these are things i cant say to anyone

Hi,
I also empathize with you and understand how sue feels aswell, I am in the same boat, husband with mixed dementia, (can't converse) and both parents with memory problems getting worse by the day and all that goes with it, hospitals, clinics finances, etc . I'm glad you can have a rant and share your feelings,you have both said it all. Our lives are what they are and unfortunately we can't change a thing until we go through another problem, see, I can't find the right words, but I totally understand your rants.Lets just hope there's something for us when we've done our good work, we must deserve something after all this, or not? That's if we're not too old and frail ourselves.

 

[geo]

Hey. I think we must all go through this stage. Want life back then feel that awfull guilt for thinking that way, but that is a normal human reaction isn't it ? Well it must be or there are a whole lot of us guys that wouldn't be human. Hugs and sympathy coming your way. X geo girl

 

[Weary]

Thank you so much guys for you replies. Im so glad im not the only one to feel this way. It would be nice to think our lives will improve and that there will be a reward for us as Feline says but the world doesnt work that way does it? We are really struggling financially. Over the years both parents have cost us dearly having to take time off work etc but the inheritence money now goes to the government. Everything about alzheimers is so unfair - if she had smoked herself to deaths door she would get a heart and lung transplant on the NHS which would cost the earth and all for free.

Dont get me wrong its not all about the money. If we could have her back tomorrow id gladly give it all up and more in a heartbeat as she was the loveliest woman. Its just that all this just adds to the total misery - its like you are punished tenfold with this wretched disease.

 

[Weary]

The nightmare is finally over :-(

MIL died a couple of weeks ago - her nightmare and ours is finally over. She was taken to hospital with stomach pains and vomitting and they discovered a bowel problem which needed an operation. As she was so frail they decided that she would not survive the anaesthetic and we made the painful descision to withdraw all treatment and fluids except pain relief. Thankfully after the first few days she was in a coma and comfortable. The pallative care staff were fantastic and we spent 5 days at the hosital with her all day and every day just holding her hands and talking and singing to her. On the final day we had the priest give her the last rights and about 20 minutes after his visit she took her last breath with my husband and i holding her hands.

It has been a very long and painful journey and a very traumatic end with feelings of relief its finally over for her and of course guilt for wanting it to be for her and our tormented family. But i can honestly say we did everything in our power above and beyond the norm to help and care for her so take comfort in that. Funeral is next week.

Thank you to anyone who has ever posted to me during these dark days and i wish you all peace and better days x

 

[Fred Flintstone]

MIL died a couple of weeks ago - her nightmare and ours is finally over. [...] On the final day we had the priest give her the last rites and about 20 minutes after his visit she took her last breath with my husband and i holding her hands.

Death is an important and inescapable part of life.

You and your husband made an exceptionally diligent and supportive contribution in the particularly grisly path that led to your mother-in-law's.

It has been a very long and painful journey and a very traumatic end with feelings of relief its finally over for her and of course guilt for wanting it to be for her and our tormented family. But i can honestly say we did everything in our power above and beyond the norm to help and care for her so take comfort in that. Funeral is next week. [...]

I believe you. Mourn for a while, then start living again for yourselves.

Fred



[Please excuse my facetious screen name.]

 

[Pear trees]

After a particularly bad visit or phone call with my mum I frequently wish she would die and free us from this nightmare. She is argumentative, awkward and abusive and not appreciative of all we do. She was selfish ,self centred and lazy even before dementia and a generaly difficult and distant person who expects us to drop everything to help her, which is impossible as we all work and have partners, grandchildren etc.
All we can do is our best and keep her safe and looked after as best we can.

 

[Weary]

Thank you Fred.

Pear trees dont feel guilty for the way you feel. Some people dont deserve the care and burden we have to take on for them. My MIL was the sweetest kindest person who had a hard life and didnt deserve it and we all loved her dearly, but it was still hard to carry the burden of all it entailed and not resent it as you are dealing with it for years for someone you no longer recognise and who no longer recognises you. Only those who have gone through it will ever understand.

 

[patsy56]

After a particularly bad visit or phone call with my mum I frequently wish she would die and free us from this nightmare. She is argumentative, awkward and abusive and not appreciative of all we do. She was selfish ,self centred and lazy even before dementia and a generaly difficult and distant person who expects us to drop everything to help her, which is impossible as we all work and have partners, grandchildren etc.
All we can do is our best and keep her safe and looked after as best we can.

Pear trees, please we all feel guilty at times. I feel guilty because I should care more. But I was never her favourite I was dads. She is now trying to make me take his place. Yes I know sometimes if she just died things might be better.

 

[Glendamary]

Feelings in common

My mum is in late stage dementia. She is in a lovely care home where the staff are caring and seem to be very fond of her. I used to visit every day, but as she's got worse and worse and can't speak coherently or stay awake for more than a maximum of 15 minutes I've cut down to about three times a week. When I go, it's usually after work which is her tea time, and I tend to feed her otherwise she sleeps through. Last weekend I had a call to say the staff couldn't rouse her - and a GP, who only actually took details of her symptoms on the phone, diagnosed a TIA and asked the staff to call an ambulance. I was with mum in hospital until she was on a ward and settled, then went back in the morning. She had already been discharged as they could find nothing wrong, so we waited all day for stretcher transport. All day she was totally unresponsive - sleeping for the whole day. I found myself wishing that it was the end of things and I feel so guilty for feeling like that. If the old mum could see how she is she'd be horrified, she was so intelligent and proud and attractive, and now she's doubly incontinent and she's pulled out teeth which were rotten, her eyes are often gunky but she can't have eyedrops constantly and she doesn't remember family or friends or respond to instructions or anything. Is it wrong to wish that it was over, for her more than me although I do find it distressing. I am really confused by how I feel about it.

 

[Weary]

No its not wrong to feel this way- we all feel like it but we cant say so except on this forum as anyone who hasnt experienced it wouldn't understand. You want it over for your loved one and you also want your own life back - dont feel guilty for being human and a loving careing person! When there is no possible cure and only worse to come how can it be wrong to want it to end?

We are all forced to live the nightmare. Stay strong and just keep careing - its all you can do. Id like to say it will get better but i cant. I just hope you have the support you need to get through your nightmare.

 

[Glendamary]

Thank you Weary. I am one of two, and my sister lives in North Yorkshire while mum and I are down in Essex. She would do more I know, but it's impossible so there's a certain amount of jealousy that she has got that distance. I have big plans for my middle age - but I can't fulfill any of them as they involve travel and I just couldn't go away for a lengthy period of time. I hate not being there all day on Christmas day, I did spend the first Christmas she was there all day with her but it was a nightmare. I live on my own so unless I phone my sister and make her feel guilty or phone my kids there's no-one instantly there to moan to. I do come across as a really miserable person, but one of my joys is making her laugh by singing her a silly song or something and the other day she'd just had a bath and she was wearing a really soft dressing gown and I put my head on her chest and she was stroking my hair. It was such a special moment - I came home and howled my eyes out. I so wanted her back as my mum full time.

 

[Gigglemore]

Glendamay I'm so glad you had that lovely moment of your Mum stroking your hair.

"If the old mum could see how she is she'd be horrified" - yes, I think many of us know how you feel. Don't feel guilty for wishing that she had been taken quickly by the last TIA. So many of us have those horrible mixed emotions to deal with - longing for the person to be released quickly once we know there is no hope of improvement.

Take care, and I do hope you keep singing those silly songs and get a few smiles.