Does the guilt ever leave you?

LindaJaneW

Registered User
Jun 15, 2021
11
0
I saw my dad's behaviour deteriorate last year, so i emailed his GP, asking for help. HIs GP (luckily a dementia specialist) called him in for a check up, then sent him for a scan. Dad was diagnosed with Alzheimers and vascular dementia last autumn. He and mum (85 and 83) carried on until mum had a fall and i moved in to support them. I noticed his deliriums and rages were getting worse, and sadly he had a major episode at the end of April. I had to call an ambulance, and since then he has been in a care home under "discharge to assess" We've now been told he will have to stay in EMI care as he is becoming more aggressive (verbally) and agitated. He hasn't been told yet. He keeps calling me and mum, crying to come home. I feel he is deteriorating in the care home, because he is so agitated to come home. But if he was at home he would be getting agitated at the most innocuous things, and taking it out on mum. It's utterly heartbreaking, particularly for mum. They have been very happily married for 63 years, and only even spent a week apart (when dad had surgery for lung cancer) He survived that, but this is killing all of us. I feel utterly wretched (I called the ambulance and feel massive guilt every day) I know I only asked for help (his GP surgery recommended calling the ambulance as dad was raging by this point) but i feel i have killed my dad
 

karaokePete

Registered User
Jul 23, 2017
6,534
0
N Ireland
Hello and welcome @LindaJaneW

After reading your post I was left with the thought that you did the right thing.

You have not killed your dad and I hope that the home will eventually sort out medication etc to make things better for him.

I wonder if the GP might prescribe a short course of something to help your mum through what is a difficult time for her too.

I wish the whole family strength.
 

Duggies-girl

Registered User
Sep 6, 2017
3,620
0
@LindaJaneW You have done everything that you should have, you are in an impossible and truly awful situation but it is not your fault. It's horrible what dementia does to families but it is impossible to fight it and many of us on here know just what you are saying. I had to call an ambulance for my dad which led to a three week hospital stay, three falls and much more, he came out a physical wreck and had declined mentally so needed 24/7 care from then on. Should I have done what he asked and left him on the floor where he would have died. I am sure that he would have preferred that if he knew what was coming but we can't predict so we just do what appears to be the best thing at the time.

It's a no win situation and the reason you feel guilty is because you are a very kind and caring person, you must be to have moved in with your parents to look after them. I did the same when dad came out of hospital, I moved in with him because he needed help and I couldn't ignore it.

You will find many posts on here with similar stories and it is always the one who does the caring who is left feeling guilty. Those who don't help generally don't feel guilty at all.

Your dad cannot come home if he is aggressive but hopefully he will settle and you and your mum will be able to visit but not yet.

Wishing you and your mum some peace of mind.
 

margherita

Registered User
May 30, 2017
3,280
0
Italy, Milan and Acqui Terme
Hi @LindaJaneW ,
Last Thursday, early in the morning, ( I was sleeping after a rough night) my husband was found by a jogger lying outside the locked gate of the garden. He must have climbed over the gate or the fence to go wandering. The jogger had called an ambulance, which took him to the A&E. He was so unmanageable, even more than he had been over the last months , that I decided to have him discharged to a care home.
Long story short, now he is in permanent care and at the moment he isn't settling. To be honest, I don't miss him and I am relieved that the nightmare of the last months is over. I am sad for him and really sorry about what he must be going through, but I do not feel guilty because I am not responsible for his dementia and his wandering.
You haven't killed your dad because what's happening isn't your fault.
 

LindaJaneW

Registered User
Jun 15, 2021
11
0
Hello and welcome @LindaJaneW

After reading your post I was left with the thought that you did the right thing.

You have not killed your dad and I hope that the home will eventually sort out medication etc to make things better for him.

I wonder if the GP might prescribe a short course of something to help your mum through what is a difficult time for her too.

I wish the whole family strength.
Thank you x
 

LindaJaneW

Registered User
Jun 15, 2021
11
0
Hi @LindaJaneW ,
Last Thursday, early in the morning, ( I was sleeping after a rough night) my husband was found by a jogger lying outside the locked gate of the garden. He must have climbed over the gate or the fence to go wandering. The jogger had called an ambulance, which took him to the A&E. He was so unmanageable, even more than he had been over the last months , that I decided to have him discharged to a care home.
Long story short, now he is in permanent care and at the moment he isn't settling. To be honest, I don't miss him and I am relieved that the nightmare of the last months is over. I am sad for him and really sorry about what he must be going through, but I do not feel guilty because I am not responsible for his dementia and his wandering.
You haven't killed your dad because what's happening isn't your fault.
Thank you Margherita, I posted this after reading your original post. My mum is in the same place as you, she really does not miss how he had become, he really has been Jekyll and Hyde for the last few months. When i moved in with them temporarily, after mum hurt her back after a fall, he was fine for the first 4 weeks (and we made some amazing memories with him) but then in the 5th week he started ranting and railing at her. I honestly believe he would have killed her if I hadn't intervened, the stress was causing her not to eat, and she was very weak. I hope he gets moved to his permanent care home very soon, and settles. At the moment, he is very confused, very angry, and calls us pleading and crying to come home, which is heartbreaking. This really is the cruelest disease. I hope things improve for you now, and you can visit your husband soon xx
 

LindaJaneW

Registered User
Jun 15, 2021
11
0
@LindaJaneW You have done everything that you should have, you are in an impossible and truly awful situation but it is not your fault. It's horrible what dementia does to families but it is impossible to fight it and many of us on here know just what you are saying. I had to call an ambulance for my dad which led to a three week hospital stay, three falls and much more, he came out a physical wreck and had declined mentally so needed 24/7 care from then on. Should I have done what he asked and left him on the floor where he would have died. I am sure that he would have preferred that if he knew what was coming but we can't predict so we just do what appears to be the best thing at the time.

It's a no win situation and the reason you feel guilty is because you are a very kind and caring person, you must be to have moved in with your parents to look after them. I did the same when dad came out of hospital, I moved in with him because he needed help and I couldn't ignore it.

You will find many posts on here with similar stories and it is always the one who does the caring who is left feeling guilty. Those who don't help generally don't feel guilty at all.

Your dad cannot come home if he is aggressive but hopefully he will settle and you and your mum will be able to visit but not yet.

Wishing you and your mum some peace of mind.
Thank you xx
 

margherita

Registered User
May 30, 2017
3,280
0
Italy, Milan and Acqui Terme
Thank you Margherita, I posted this after reading your original post. My mum is in the same place as you, she really does not miss how he had become, he really has been Jekyll and Hyde for the last few months. When i moved in with them temporarily, after mum hurt her back after a fall, he was fine for the first 4 weeks (and we made some amazing memories with him) but then in the 5th week he started ranting and railing at her. I honestly believe he would have killed her if I hadn't intervened, the stress was causing her not to eat, and she was very weak. I hope he gets moved to his permanent care home very soon, and settles. At the moment, he is very confused, very angry, and calls us pleading and crying to come home, which is heartbrg. This really is the cruelest disease. I hope things improve for you now, and you can visit your husband soon xx
Hi @LindaJaneW ,
I know you dad's pleading and crying are heartbreaking, but if you let him come home, after a few weeks ( days? hours? ) of peace the nightmare would start again.
 

Lorna44

Registered User
Jul 16, 2016
229
0
Surrey
I know how hard it is but he is in the best place, though it will take a while to settle. It took 2 months for my mum to stop packing to come home every day.... another suggestion, though I know its hard, is to remove his way of contacting you, if he has a mobile, maybe it develops a problem. All the time he is able to call you at any time, its a reminder to him, & stops him from settling
This is not your fault, or your Mums, its Dementias fault, and it's horrible.
Big hugs x
 

northumbrian_k

Volunteer Host
Mar 2, 2017
4,415
0
Newcastle
If it had been any other kind of health emergency would you have hesitated @LindaJaneW ? Would you be wracked with guilt for doing the right thing in calling an ambulance? So you shouldn't be now.

The consequences of your actions are not in your control. You got help for your dad when he needed it most. You should take pride in that and in your continued support for him and your mum. You are going through a difficult time. Be reassured that you are 'guilty' only of doing what is best in the circumstances. Don't beat yourself up for having the courage to act.
 
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Nurse Snafu

New member
Dec 27, 2017
5
0
South East
I wondered if you would find this booklet helpful @LindaJaneW.
Hello Izzy, what a good resource, many thanks for sharing.
And @LindaJaneW thinking of you and hope the feelings of guilt ease as time passes. I remember calling an emergency GP for my Dad once and he was absolutely seething by the time the poor chap arrived, really angry with us for doing it but he was very poorly with a UTI and could barely stand. Such a vile disease which leaves all those involved feeling wretched. Take care.
 

Suze99

Registered User
Nov 8, 2020
54
0
@LindaJaneW I am so sorry that you find yourself in this position. It must be so hard trying to balance both your mum's and dad's needs. From what you say though you have done the only thing you could. Both parents are safe and hopefully your dad will settle down and you will be able to visit and enjoy time with him. I think everyone on this forum understands and we all feel guilt even though we absolutely shouldn't. Dementia is a cruel disease and we can't control it.
Take care and sending love

Sue x
 

MaNaAk

Registered User
Jun 19, 2016
11,754
0
Essex
Thank you xx
Dear @LindaJaneW ,

You are a heroine. When I put dad in the home I felt grief, guilt and also relief. I had to call the ambulance half a dozen times in the year leading up to this and he wandered up the road twice. We also went through two care agencies because my gentle dad was getting aggressive. He settled into the home very well and when he became aggressive the doctor/nurse recommended memantine which is what your dad probably needs.

MaNaAk

PS: I think you should have a chat with the manager to see how your dad is getting on when he's not phoning.