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Old 01-27-2017, 10:31 PM
 
Location: The house I built
308 posts, read 132,335 times
Reputation: 741

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I am not even sure why they call it that. It is not a process, it is just day to day emotional breakdowns followed by periods of relative normalcy. I lost my wife of 38 years after an 8 year battle with cancer. I was her caregiver and those were the most difficult and heartbreaking times of my life. If you have been a caregiver you understand the hopelessness of seeing a loved on suffer and die a slow death. You go outside to hide from others while you scream and have your little meltdowns.

Doctors and nurses sometimes corner you to see how you are doing. And you are so choked up you can't even talk. They get it. They know.

Then you go back inside and stay positive and attend to her needs. Your discomfort takes a back seat to her comfort. There will be plenty of time for you later. Unfortunately.

We had a really really good marriage. She was everything to me. I loved her dearly. Being her husband was so easy. She was so loving and caring and put others before her self.

We knew the inevitable. But I never prepared for it, seldom gave it a moments thought. I was too busy daily putting out fires and administering meds and constantly in and out of the hospital. Very little sleep those days. And all of a sudden it was over.

It hasn't been that long. I have been reading a lot online about all of it. I keep a blog, its pretty private actually but it helps to daily put down my feelings and progress and relapses. Some days it is actually pretty positive, other days it takes and extremely dark and depressing tone. Since it is anonymous, I don't worry much about what I say. I just let it out.

I attended a grief group. For some people it really helps to share with others. To be around people who understand exactly what you are going thru. Try it if you haven't already.

For me I knew I could not do that. I didn't want to re-live all of it each week. I just don't see the point. I did have lunch with a friend who lost her husband about a month earlier than I lost my wife. It wasn't a cry fest but I think we just needed to know we were not the only ones going crazy. We talk or send messages from time to time. She is leaning heavily on family and friends to get through her own grief. A good plan I think.

I also have a penpal. We have never met, she is also a caregiver. Her days are just as stressful as any. I think the letters allow us to vent and share things some people would not understand.
I share on a widowers forum on occasion. It also helps as you are reminded that your situation is not so unique.

And I also bury myself is projects. I do a lot to keep myself busy and distracted. So these are the things I do to get thru this. And I have learned that you never get over it or never forget. You just get to a point where it no longer controls your life. You remember, you cry, and then you pick up all the branches the wind dropped in the yard. And then maybe you cry again cause she is not there to tell you how much better it looks.

I loved being with her, I loved being in love with her. And I know I do not do the alone thing very well. Eventually I will date again. I have no clue what that will even be like. Not really ready yet. Maybe in a few months. I don't think I would marry again, but never say never. It gets really complicated at this age. For men and women both.

It is said that people from good, loving relationships are more likely to try again than people who were in relationships that didn't quite workout so well. And men are more likely to date again fairly early and women are likely to wait for years or never date again. Men are very simple. We see it as something is broke and we want to fix it!
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Old 01-27-2017, 11:42 PM
 
Location: Somewhere in northern Alabama
16,845 posts, read 51,301,408 times
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Sorry for the loss of your dear wife, and kudos to you for being there and supporting her both emotionally and physically through her experiences.

The role of caregiver can be all-consuming, and when it is suddenly gone there is an emptiness that can seem like it will never be filled. Be kind to yourself, take it a day at a time, reach out when you feel the need. Never kid yourself that there isn't a part of her that still lives within you. Don't be afraid to talk out loud to her, don't be afraid to write your journal entries with letters to her. A relationship that is long and loving doesn't disappear, it simply changes in aspect. It takes time, and every person has his or her own path through the grief and pain.
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Old 01-28-2017, 12:39 AM
 
Location: The house I built
308 posts, read 132,335 times
Reputation: 741
Quote:
Originally Posted by harry chickpea View Post
Sorry for the loss of your dear wife, and kudos to you for being there and supporting her both emotionally and physically through her experiences.

The role of caregiver can be all-consuming, and when it is suddenly gone there is an emptiness that can seem like it will never be filled. Be kind to yourself, take it a day at a time, reach out when you feel the need. Never kid yourself that there isn't a part of her that still lives within you. Don't be afraid to talk out loud to her, don't be afraid to write your journal entries with letters to her. A relationship that is long and loving doesn't disappear, it simply changes in aspect. It takes time, and every person has his or her own path through the grief and pain.
I do talk to her on occasion, I even wrote a letter to her on her facebook page. I stopped doing that though cause it was difficult for some people to understand. A lot of people/family gave me kudo's for staying with her 24/7 and staying after the doctors and nurses. I always just told them that she would do the same for me. And she would have.

Even though we went to the same hospital for most of the last two years, I had to break in every new doctor and crew of nurses. Their medical knowledge was way beyond mine but I knew her situation intimately as I lived it with her every day. And we had dozens of hospital stays the last 18 months. I am sure we spent more time in the hospital then we did at home. She was constantly having infections and minor procedures due to all the tubes she had. She told me she wish she had not gone thru the last surgery. It gave her a few extra months of life but she was never able to get on her feet afterward.

Her care needed a few special things that were not always obvious as her chart was a few inches thick. The doctors and nurses didn't always have time to go through everything so I got a bit of a reputation for telling them how it was going to be. A few hated me but most respected me for taking an active role in her care. I went more than a few rounds with hospital management and lots of rounds with charge nurses. I can say the majority of people in the medical profession are there for the right reasons.

The day before she passed, she told her friend she was just done. And she told her she was worried about me. Her friend checks up on me fairly regularly.

Right now I am doing okay. Some days are difficult, most are just going about my routine and when the tears come I just let them flow and they usually pass quickly.

My support structure and all the writing serve me well. Unloading in my blog helps a lot. With my penpal we have been writing a long time so I get feedback that I could not get anywhere else. That is something they recommend for grief is to have a penpal who knows and understands as they experience those same feelings and emotions.

Yes, she will always be a part of me. My daughters removed her clothes and a lot of her stuff. It was willed to them and it is not good to keep too many reminders around.

A friend took a lot of pictures he had us together at the coast which was her favorite place. We set up a whole lot of photo's from her entire life on three walls when we had a celebration of her life here in our home. The ones my friend had framed are still hanging. In a way they are sort of a shrine and soon enough I will have to take those down also.

The life we had died with her. And I have to accept this new life regardless of wanting to or not. I am doing everything a person is supposed to do with the exception of group or individual therapy. I am not the type that needs or wants to share tears with a group or an individual. I don't need a hug. I have been through enough in my lifetime to know myself really well and time, patience and positive attitude will be enough.
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Old 01-28-2017, 09:57 AM
 
Location: Somewhere in northern Alabama
16,845 posts, read 51,301,408 times
Reputation: 27663
You are doing just great. I am very impressed with your understanding and the way you are structuring. At this point, if you continue the way you are, it will simply be a matter of time before the grief becomes less intense and the good life you had together begins to re-assert as your dominant set of feelings. My wife was not in the hospital as long as yours, but I echo your experience. One aspect of hospitals is the constant "need" for monitoring vitals, doing this or that test, and making any sort of meaningful sleep and rest impossible for the patient. I had to resort to demanding minimal interruptions in the night, and I and family members took over the bed cleaning and personal hygiene to have it faster and less disruptive, as well as take a small load off the staff. The memories of that are becoming less pressing as I review and remember the better days. I had a big help after her death in that her daughter, who had assisted me, needed help and support in her personal life and we spent hours on the phone consoling each other and changing focus to her problems in the present. The penpal idea is a very good one.
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Old 01-28-2017, 12:25 PM
 
Location: The house I built
308 posts, read 132,335 times
Reputation: 741
Yeah, harry ckickpea, you have been thru a very similar episode. The nurses would bring in help to clean her up and clean the bed. I let them do it all their way. At home I was usually on my own but watched them enough to see how it was done. We had nurses come in a few times a week at home to check on her and change the port etc.
Hospice turned her down twice. So I did everything at home. My son would take over at night while I slept.

I forgot about the sleep issue and the vitals and all the pain killers.
I went around a few times with the nurses about why don't you just let patients sleep? Most of her hospital stays were after visits to the ER. When most of the staff and doctors know you be name it is not a good thing.
After awhile when the doctor would come in and tell me they were going to admit her, I would tell him or her all the instructions I wanted written into her chart.

No vitals between 11pm and 6 am. They would do just a visual without waking her up. Her pain meds would be .5ml-1ml if she complained and asked for it. There would be no automatic pain injections. Her meds for nausea were also reduced and only when she asked for it. And the nurses would check the drains at every opportunity and never more than 45 minutes.
Eventually through the efforts of two different charge nurses and myself we jerry rigged a system to have the stomach vacuum handle her drains and that was a godsend for her and the nurses.

They had a habit of giving her too much pain meds and too much anti nausea meds. She was a very small lady. Around 100 pounds. 2 ml of hydromorphone every few hours and the ativan combined made her looped. She was there but a lot of times nobody was home and she would see things. Eventually she would get much less of both.

It made a big difference reducing her meds. She was back to being herself mentally and feeling better. I stayed after them constantly after we figured this out. For the last 18 months, my entire life revolved around her care and doctors and nurses and home care nurses and mixing medications and fighting with insurance companies. Middle of the night problems. I had to stay within hearing distance of her the whole time. I would get family and friends to come over and babysit while I went to the store.

Most caregivers spend everyday on the ragged edge and most family and friends have no idea what the caregiver might be going through. I would call it quiet desperation.

I found my penpal by placing an ad on CL looking for other caregivers in similar situations. I got several replies. Some very near, and I sort of hit it off with one who lives in another state. I would suggest if anyone goes the penpal route, find one too far away to visit. You end up sharing just about everything and there would be a temptation to meet in person. It could be a positive thing, and it could also cause you both a lot more problems and end the penpal relationship.
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Old 01-29-2017, 12:31 AM
 
3,962 posts, read 5,248,587 times
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Stevie, how long has it been since your wife died?
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Old 01-29-2017, 01:05 AM
 
Location: The house I built
308 posts, read 132,335 times
Reputation: 741
Quote:
Originally Posted by G Grasshopper View Post
Stevie, how long has it been since your wife died?
Almost 3 months. And I am still in a daily struggle. I am fine, then a reminder and I just let the emotions go. And then in a few moments, I am fine again. I have been through difficult times before and so I am very mentally strong and resilient. I would like to get thru this but they say it is just time.
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Old 01-29-2017, 02:16 PM
 
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Stevie, You are in the early days of your loss. I know what agony this is. My advice is to find what support you can and take good care of yourself by eating well, getting enough sleep and getting our for walk or other exercise as much as you can. This is a long road. I know the pain just seems overwhelming. I was at least encouraged by knowing how many widows and widowers there are out there who are living productive, good lives. It takes time, but it is out there somewhere. Right now you are just trying to keep your head above water in an ocean of grief. Try to give yourself a little respite now and then by finding some beauty in the world. If you need to just sit and think or look at pictures or listen to music, do that. I spent so many hours reliving so many memories of my husband - over and over those memories of better times obsessed my mind. Let it happen. If you don't want to think about anything else, that's OK. Eventually you will start thinking of other things. Be very patient with the process. It is mightily painful and overwhelming, but keep in the corner of your mind the faith that you will emerge a whole person at some point.

Wishing you patience, comfort, and faith.
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Old 01-29-2017, 03:53 PM
 
Location: The house I built
308 posts, read 132,335 times
Reputation: 741
At first, it felt like I had to relive every single memory in minute detail and just pour my soul out onto the floor. As a caregiver, my life was 24/7 at her side and there were never more than a few moments for myself. It was almost a nightmare. I was not prepared nor did I even try to for the inevitable. How would you prepare not knowing what it even means? I did everything I could and then some and for the last few years it has been just the hardest experience I can imagine.

She loved her life,she fought so hard to live. I caught her crying sometimes. I would kiss her and hold her and tell her I loved her. And then I had to go hide somewhere before she saw my own tears. I felt like I needed to pretend to be much stronger than I actually am. She already had enough to worry about. I wanted her to know she could depend on me every moment.

I don't dwell on too many memories of the caregiver times. What hurts the most are the memories from before. Before the cancer took her ability to walk and do things. I was married to a woman that was so pleasing just to look at and so loving and caring about myself an her family. Some people find newlyweds annoying. They are always holding and cuddling each other. It usually ends or lightens up after a few years. With us, that holding and cuddling and affection never stopped. I don't know how many times our grown children told us to "get a room".

I talk to her. I write her letters. I write in my blog and I share with a penpal. I keep very busy with my hobbies.
This morning I worked on building some more raised beds for my garden. I am working on my own health, going to the gym and working in the yard. For the most part, I am fine outwardly and nobody would even suspect I was experiencing inner turmoil. I have friends I can call and do chat with a few on occasion.

When the emotions come up, I just cry and get it over with. It almost always passes quickly. I pride myself on being a survivor. I know I will accept and adjust and keep on. That doesn't make it any easier.
I don't always know if the emotions are the grief or the loneliness.

I am kicking myself this morning just a little bit. I was invited to go out and into a situation where there would be lot of women. Knowing my friends who invited me, they would likely have made sure I was not ignored. Exciting and scary at the same time. I called them and told them I am just not ready yet.

It was not an easy decision. And right now part of me thinks I did the right thing and part of me, (the part that really desires female company) is not speaking to me.

I want to meet someone again. I want to date as scary as it sounds. I am trying to prepare myself for that. But for now, I will just continue as I have and try to keep myself busy as possible.
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Old 01-29-2017, 05:24 PM
 
3,962 posts, read 5,248,587 times
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I am 2 years and 2 months out from losing my husband. I think that even with all that warning that they will lose the battle, you simply cannot prepare for losing the love of your life because you just can't imagine life without them. I had no idea before he died of how it would affect me. I no longer have an obsessed mind, and my memories are no longer painful, but are wistful. I miss him every day. But I am pursuing my own life, developing things that bring meaning and pleasure. Like you, I don't dwell on the caregiver times. Sometimes now, they seem distant and I wonder "Did I really do all that?" In fact, yes I did. But I remember the good times much more often. I recently went to an occasion where there were lots of men, and I found myself looking for people who looked sort of like my husband. That tells me I am not ready for this. My mom remarried two years after my dad died and she made a point of telling us that she found someone who was "so much like your father." She married a guy based on her love for my father, not because she loved the new guy. And he married her based on the life insurance she got, not because he loved her. It was a disaster. They eventually divorced. Maybe that is not the best story to tell. The truth is that everyone is different, and that you will know when it feels right. But I have definitely heard of remarriages that didn't work because one of them was still in deep grieving.

Being alone is really hard and painful at first, but it does change as the grief starts to abate. It sounds to me like you are dealing with this well. As painful as it is, and as much as you would like this to be over, you just have to stay with it. It will get better.
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