Caregiver's Grief Began Long Before Her Husband's Death

[okarol]

Caregiver's Grief Began Long Before Her Husband's Death

Dear Abby is written by Abigail Van Buren, also known as Jeanne Phillips, and was founded by her mother, Pauline Phillips.

By Abigail Van Buren Abigail Van Buren – Thu Sep 24, 2:16 am ET

DEAR ABBY: I am responding to "Alone But Happy in Canada" (July 12), who feels guilty because she feels relieved following the death of her husband from a long, difficult illness.

Everyone grieves differently, but I don't think grieving a loved one's loss BEFORE his or her death is uncommon. I've known several people who watched loved ones wither away into helpless, needy and miserable individuals. I can't think of one who didn't feel the same as "Alone But Happy."

I have begun referring to it as "grieve-as-you-go guilt." A person grieves through the decline and eventual demise of a beloved mate, and when she fails to feel sadness, she substitutes guilt where she believes her grief should be. But actually she has been grieving all along, and needs to acknowledge that fact. Only then will she be able to enjoy not only her clean house, but her clear conscience as well. -- AZY IN WASHINGTON

DEAR AZY: You have keen insight. Other readers wrote wanting to offer reassurance to "Alone But Happy." Read on:

DEAR ABBY: Your answer to "Alone" was appreciated by all caregivers, I'm sure. Nobody knows, unless they have walked that particular path, how difficult and lonely it is to watch a spouse disappear over a long time, losing the history you share together, making hard decisions alone, and rebuilding an identity not tied to the past. Every morning brings a new bout of grief from the moment of wakening -- every day another day you don't want to face.

Keeping healthy and planning ahead for yourself, not as a caregiver but as a participant in the "real world," is the only way to maintain sanity sometimes. Though I love my husband dearly, I look forward to having a life again that is not centered on his disease. No one should be made to feel guilty for restarting life when he or she has given so much. -- DAY AT A TIME

DEAR ABBY: I also lost my husband of 35 years just a month ago. He endured several years of health problems and as his caregiver, I, too, felt a great sense of relief with his passing. I do not, however, feel guilty about it.

I realize that I have been grieving for several years already, as I knew this time would be coming. In many ways it is as if I am in the final stage of the process even though my husband's death has only just occurred.

Our son put it best when he said at my husband's bedside, "I lost my dad several years ago, but my father died tonight." He, too, understands that his grief began a long time ago. -- MOVING FORWARD

DEAR ABBY: Having to put another person's needs and wants before one's own can be very stressful. Not everyone is able to do that and stay pleasant and patient at all times. Fortunately, I found a local caregivers' support group. Our weekly meetings help us see that we are not alone in experiencing the trials and tribulations of family caregiving.

For those who are laboring to do their best for their sick or disabled loved ones, let me suggest they find a Senior Information and Assistance office in their area. Another resource is the National Family Caregivers Association (www.thefamilycaregiver.org; phone (800) 896-3650). These may be helpful in allowing caregivers mental and physical relief by connecting them with hourly in-home care services.

It is important that people experiencing this kind of stress get respite time to themselves, away from their care recipient, in order to be able to keep on helping them. -- ONE OF THE MANY

[pamster42000]

There were times when Sarah was transferred to her transplant center 2 hrs. away and I wasn't certain what news I would get when I arrived. I found myself planning a funeral for her as I was driving there. Now I don't feel guilty or morbid after reading this article.

Also there was a certain amount of relief when Sarah passed away. It just tore at my heart watching her daily in pain and not being able to do the things a 25 year old should be doing.

I was working at a wedding reception about six months before Sarah passed away and alot of Sarah's friends from high school were there. I felt sad that Sarah wasn't able to be there dancing and having fun. 

After Sarah's funeral apparently there was comments made that I didn't show grief by crying etc. There was only one person who talked to me later about this subject and he understood. She was no longer in pain and and didn't have to struggle with day to day issues which other people take for granted. I miss her greatly but her earthly body could no longer handle the demands of ESRD and if there is a heaven I look forward to seeing her smiling , walking with no pain and just plain happy when I pass away.

[Meinuk]

I didn't cry at my mother's funeral.  Although she was gone, she was finally out of pain. People thought I was too shattered to emote.  I just looked at everyone who came to all of the funerals and wondered where the hell were they when she needed them? - that is why I hate funerals.

People ask what is it like to die without dialysis?  I had a front row seat.  The lethargy, the itching, the nausea and the misery.  After the nausea, I remember the itching the most.  I would scratch her back and apply lotion, or I would hold the basin as she threw up, rubbing her back all the while - I still do that with people I love, I'll be curled up on the sofa and just rub their back - comforting is a way of expressing love.

Caring for someone who is dying is painful and soul altering.  It could break your spirit if you let it.  Loving someone who is chronically ill isn't easy.  No one signs up for it (well if they do - that is fodder for a different kind of post).  It is because I lost my mother to CKD (PKD) I chose not to have children.  Her death changed me.  But, it also gave me the strength to fight the battle when my time came.  I thank her for that.  And only having her in my life for 13 years also taught me early to cherish the fragility that life really is.  Eventually, everyone dies.  It is what you make of your time living that counts.

I am glad that I was a caretaker first, before I was the patient - it made those years in-between easier to navigate.  I knew that nothing could be worse than those last few months.