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Old 03-17-2015, 08:24 PM
 
Location: Austin, TX
16,688 posts, read 39,312,378 times
Reputation: 9097

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Quote:
Originally Posted by cynwldkat View Post
My husband of 27 years died of ALS almost 6 months ago now. For some reason I felt "I" could save him--I tried so hard.....I worked day and night with him...but the ALS finally won.
I'm sorry Cyn... I know what you mean. I thought I could save her and I tried so hard. It was such a shock when I could not. It was not ALS or the cancer she had, but incompetent medical care in my opinion. Regardless, in spite of my efforts I could not save her... it was such a shock and ... disappointment... I felt a personal failure... even though I know it wasn't mine.

Some things are out of our control and we must forgive ourselves for not being able to for see and control them.

Hugs....R
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Old 03-17-2015, 08:48 PM
 
7,695 posts, read 12,841,965 times
Reputation: 9599
This must be a common theme..

I felt like I had to know every detail of his treatment and be the care coordinator..
After being on top of every detail for 3 months straight the Drs would sometimes ask me
questions about past treatments because they knew I would know...

The hospital staff constantly broke there own infection control guidelines so
I was the gatekeeper..

Then when he got hospital acquired flu and they misdiagnosed it for 4 days
he was too sick to recover..
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Old 03-17-2015, 09:12 PM
 
Location: Austin, TX
16,688 posts, read 39,312,378 times
Reputation: 9097
Quote:
Originally Posted by kelly237 View Post
This must be a common theme..

I felt like I had to know every detail of his treatment and be the care coordinator..
After being on top of every detail for 3 months straight the Drs would sometimes ask me
questions about past treatments because they knew I would know...

The hospital staff constantly broke there own infection control guidelines so
I was the gatekeeper..

Then when he got hospital acquired flu and they misdiagnosed it for 4 days
he was too sick to recover..

Far to common I'm afraid...
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Old 03-18-2015, 09:20 AM
 
Location: In a house
21,902 posts, read 20,895,074 times
Reputation: 14817
I too was the caregiver and gate keeper at the hospital. I could see where so often they were so busy they just did not do certain things properly---at least not in my opinion. There is no blame with the ALS though--and even knowing that I still feel it. But my DH did not want to live like that---we had discussed it before that time came. I have no doubt it is something I will live with forever and just learn to live with it. I suppose most people who have been caregivers go through the same.....they do survive---but it sure is a lot of work just trying to survive lately it seems. One good day and 3 bad days---a lot for a body/mind to handle. I have never ever been "alone", completely alone. I am now. My family is not near me, we are basically new to the area and I live on a rural dirt road. Yes, I am very lonely. I miss my DH!
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Old 03-19-2015, 05:04 PM
 
Location: Austin, TX
16,688 posts, read 39,312,378 times
Reputation: 9097
Quote:
Originally Posted by cynwldkat View Post
I too was the caregiver and gate keeper at the hospital. I could see where so often they were so busy they just did not do certain things properly---at least not in my opinion. There is no blame with the ALS though--and even knowing that I still feel it. But my DH did not want to live like that---we had discussed it before that time came. I have no doubt it is something I will live with forever and just learn to live with it. I suppose most people who have been caregivers go through the same.....they do survive---but it sure is a lot of work just trying to survive lately it seems. One good day and 3 bad days---a lot for a body/mind to handle. I have never ever been "alone", completely alone. I am now. My family is not near me, we are basically new to the area and I live on a rural dirt road. Yes, I am very lonely. I miss my DH!
I'm very sorry cynwldkat, I think I understand what you are feeling, having gone through something very much like what you described. I miss my wife terribly. After 38 years together, it is a loneliness like I never experienced when I was single. I am not as isolated as you are, but after years of care giving many of us have fallen away from our friends, concentrating on taking care of our loved ones. I do have friends I can get together with, but it feels so awkward now to go out to dinner or something with a couple of them, arriving by myself. I'm having to try and recreate myself all over again.

I encourage you to consider moving back closer to where you will have family and friends. They do make a big difference. That is what I'm doing, evaluating my options as I have family in several locations.
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Old 03-19-2015, 06:30 PM
 
3,962 posts, read 5,248,587 times
Reputation: 4549
Cyn, I think it is very valid to not want to be isolated when such a loss occurs. When my husband was diagnosed, we were very new to the area, and had little support. Over the 4years since then, I have made more connections. Still, I understand being on your own in a time of great stress. My mom was out in the country, with no neighbors, when my dad died. She moved into town, closer to friends, church, her job, etc., and it was a positive move for her. I think about moving sometimes, but now I am really not isolated, so I am following the often quoted maxim of not making any really big decisions for a year after the loss of a spouse. Right now I am visiting the area where my husband and I lived for 23 years, raised our son, etc. We had and I have wonderful friends here, so I do think about returning. But I am also aware that I can't re-make the past. Whether I move or not, somehow I need to make a life for myself, on my own, without my treasured husband, and I know that will take time, and will not be easy. I think we, as suvivors of spousal loss, need to be very patient with ourselves, take time to care for ourselves, and keep our eyes and hearts open for opportunities that feel right. Although I am nowhere close to it, I believe that the human heart is capable of healing, of moving forward, and of finding peace and joy, despite the loss that will always be a part of us.
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Old 03-19-2015, 07:45 PM
 
7,695 posts, read 12,841,965 times
Reputation: 9599
Quote:
Originally Posted by CptnRn View Post
I'm having to try and recreate myself all over again.
Exactly...
My kids all left the nest & flew far away about the same time
my husband died..It took 4 years to recreate my life
and find the blessings in this chapter of my life..
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Old 03-20-2015, 05:29 AM
 
1,094 posts, read 763,402 times
Reputation: 2248
I'm so very sorry for all of your losses and my heart goes out to you all.

I don't know what it's like to lose a spouse or life partner, but I do know other types of grief.

I have to say that I was blessed to have them in my life as long as I did.

I wish you all tender healing in your journey ((((((((((((Hugs)))))))))))
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Old 03-20-2015, 07:54 PM
 
Location: Tulsa, OK
5,988 posts, read 9,973,985 times
Reputation: 36679
I lost my wife of 42 years almost 5 years ago. She lost her 15 year battle with Scleroderma. I watched her deteriorate to the point where the last 6 months of her life she was so weak I had to pick her up and put her in a wheel chair. Because her disease effected her digestive tract she had dropped to less than 90 lbs so lifting was something I gladly did. What I learned was pointed out by a phrase on one of the sympathy cards I received. "Sometimes a peaceful exit is better than a painful existence"
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Old 03-26-2015, 02:18 PM
 
Location: Denver
5 posts, read 3,062 times
Reputation: 28
Default 40 days

Hello, I have never blogged or posted in a forum prior to this. I lost my beautiful wife 40 days ago and as some of you have mentioned here we are still not sure why. She was 48 and full of life. She was ill for the past several months but we thought her doctors were working to figure it out and were sure she would fully recover and we could continue with our hopes and dreams.
I am consumed with grief and think about her practically every minute of the day. I have been a fighter my whole life but cannot come to grips with the pain I am feeling right now. Reading these posts helps me to realize I am not alone in my unbearable grief but that does not blunt the reality and the finality.
I am nearly through my 3rd book about dealing with loss and grief and am reaching out to wherever I can to try and understand what I am going through.
I have much support from family and friends and we never had children although we tried, but thank God for our two dogs and cat. At least my home doesn't seem completely desolate when I come home at night.
Thank you all for sharing and I hope I can contribute positively to this forum. Right now I have no positives but I hope in time things will change.
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