The Guilt and Sadness

CocoaPops

New member
Mar 18, 2019
5
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My lovely Dad suddenly died last week of a pulmonary embolism at 69. He was diagnosed with Lewy Body just over a year ago, but the Dr’s were in the process of disputing this as my Dad had no symptoms – no hallucinations, no problems with sleep or mobility. However, he did have memory issues and would get quite agitated in the afternoons/evenings, so I’m guessing there was some kind of dementia at play. We’ll never know now though.

I’m overwhelmed with pain, sadness and guilt. Due to his illness, my Dad had become a massive part of my life. He’s been the centre of my world for the past two years. It’s been exhausting and taken its toll on me. But, I feel so guilty that there was something I could have done to prevent his death. I think there were signs which I ignored. He would get out of breath when we walked, nothing major, so I put it down to the lack of physical activity over the past year and all the piles of medication he was on. It didn’t cross my mind that he might have had a blood clot. We would always walk really fast – like he’d like to do – but he never wanted to slow down.

My Dad hadn’t seen a Dr for about 15 months. Covid played a part in this, but I was told not so long ago by Dad’s MH nurse, that there is very little medical support/reviews for dementia patients, which is just terrible. Any other life-limiting disease wouldn’t get neglected in this way.

My mind goes round and round in a loop, replaying events. I feel so angry at myself and his medical team for not preventing his death. Living with this guilt and sadness is unbearable.
 

Cat27

Registered User
Feb 27, 2015
13,057
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Merseyside
I’m so sorry about your dad @CocoaPops
I think guilt & grief go hand in hand & I certainly questioned if I’d done enough for my dad. I found this passed with time.
 

Duggies-girl

Registered User
Sep 6, 2017
3,634
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I am sorry for your loss of your dad @CocoaPops it must have been a huge shock at his age but a pulmonary embolism is not something that you would have been watching for. Like you my dad became a very important part of my life after his diagnosis and I thought the world of him. I was his main carer for a long time and moved in with him for his last year which was very hard but I am glad I did. The sense of loss when they have gone is immeasurable and your emotions will be all over the place. I knew my dad was dying (cancer) but it was still a huge shock and then there is guilt, anger, grief and relief in my case because of dads dreadful state of health. These are all normal emotions.

I don't think there is anything you could have done to prevent it happening and you should not feel guilty. You gave him lots of your time which is the most precious thing you could give him. It is true that there is limited support for people with dementia and I they certainly don't get regular reviews and neither do their carers, generally they are left to get on with it. My dad rarely saw a doctor before his cancer diagnosis and I haven't seen one for years because I was too busy looking after dad and I am almost 65

You need to give yourself some time, lots of time and treat yourself kindly. You did your best for him and you could do no more. He wouldn't want you to feel bad I am sure of that. Covid has a lot to answer for.
 

Izzy

Volunteer Moderator
Aug 31, 2003
74,387
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72
Dundee
I’m so sorry for your loss @CocoaPops and can only echo what others have already said here.

Thinking of you and wishing you strength.
 

Bunpoots

Volunteer Host
Apr 1, 2016
7,356
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Nottinghamshire
I’m sorry for your loss @CocoaPops

My dad also died of a blood clot and it was very sudden. He was known to be at risk as he’d survived a clot some weeks earlier but there was still nothing anyone could have done to prevent it. Please don’t feel guilty.
 

CocoaPops

New member
Mar 18, 2019
5
0
Thank you for your comments, they mean a lot. It helps to share my feelings with people who have some understanding of the complexities of losing someone with dementia.

@Duggies-girl thank you for taking the time to write - there's comfort in your words, but I'm so sorry you had to go through such difficult times. I was POA for my Dad for Health and Care, so it's hard to let go of that responsibility. I guess for me it's about accepting there was a limit to what I could do for my Dad and saving him from a fatal clot was not one of them.

@Bunpoots - thank you for sharing what happened to your Dad. I'm so sorry you had to go through a similar experience.
 

Spamar

Registered User
Oct 5, 2013
7,723
0
Suffolk
I had blood clots in my lungs earlier this year. After it took me an hour to recover my breath after walking from bedroom to living room, decided to phone gp. I was sent off to hospital, blues and twos for the 3rd time in 18 months, to be diagnosed and treatment started. Two days later my consultant told me if I’d waited any longer, he would never have seen me! That changed my attitude and has given me another chance!