By Carol Bradley Bursack
Nearly everyone involved in caring for aging loved ones is experiencing grief. Often, however, we’re not aware of this grief. We have a parent who used to be strong and capable begin to ask for a little assistance. No big deal, right? We’re happy to help.
But underneath, often unnoticed, there’s a knot in our hearts. We’re grieving the loss – the loss of function that made our parent need to ask for help. Weren’t they the ones who helped us? Weren’t they the ones in charge?
Generally, these changes are subtle, the grief sneaky. I remember watching my parents age in the normal fashion. I’d occasionally look at them and be startled by the realization that they were aging. But that was all I acknowledged. I never intentionally thought about loss and pain. It dwelled beneath my consciousness.
Then my dad had brain surgery to drain away fluid buildup from a World War II injury. He went into surgery knowing that if he didn’t have it, he would eventually live with terrible confusion. He came out of surgery totally demented. The combination of his age and significant scar tissue, I suppose, was to blame. Whatever the reason, our family was a victim of one of those things that only happens to “other people.”
We were suddenly thrown into a frenzy of action. There was so much to be done; there were so many decisions to make. What was best for Dad? For Mom? I became the primary caregiver, immersing myself in the task of making Dad’s existence worthwhile.
Whatever he imagined was happening, I did my best to make it so. When he was waiting for his medical degree to arrive, I made sure one did (my version looked pretty good, too, hanging on his nursing home wall.). I became his office manager. His music director. Whatever he needed, I did everything humanly possible to provide.
I had several other elders to cope with, as well as a son with chronic health problems. I didn’t have time to think of myself. Now, I look back and see what I did to myself. If I had a good friend going through all I was enduring, I would have been offering to help. I would have recognized that she was grieving the loss of the father she’d known. I would have pressed her to do some things to take care of herself. I would have suggested counseling.
It wasn’t until a decade later and Dad had died that I recognized what I’d been going through. People expressed their sympathy about Dad’s death. “I’m so sorry your dad died,” they’d say.
At times, I wanted to ungraciously answer them with, “I’m not sorry! My real dad died ten years ago. He’s been suffering terrifying dementia for a decade. He finally was able to die, peacefully, in my arms and now the suffering is over.” Yet, I knew people meant well, so I bit my tongue.
Gradually, I recognized that I’d been grieving that whole decade. I’d been abusing myself by not giving myself some slack; by not recognizing that I had the needs of a grieving person. I did not treat myself as I would have treated a grieving friend.
I now speak to groups often, and remind caregivers that they are experiencing what I call early grief – that long, slow pain that weighs on our hearts as the years of caregiving pile up; as we watch the losses mount. It’s all a part of the long goodbye.
There is another type of grief, something hospice professionals call anticipatory grief. This differs from what I call early grief (others may have a different term). Anticipatory grief is more like the grief one feels as the death of a loved one nears and we start to grieve what we know will be their loss. What will we do without them? How will we keep on living? We are looking ahead to the loss we know is coming.
JoanT
Mar 5, 2008 Suggest Removal
Carol, the unrealized grieving for the loss of what might have been in the caregiver's life is a serious issue. We choose to do what we need to for our loved ones, but in doing so we also choose not to do what we might have for ourselves or our remaining families. For example, many caregivers choose to stay home and take care of a LO instead of going back to work to help with the family finances and prepare for retirement. Or we care for an elderly LO while there are still young children at home who usually need more of our time and attention. Others end up giving up hobbies and opportunities to grow and enrich themselves--not in frivolous areas, but in areas of real value. Many new empty-nesters end up filling that nest with caregiving for an aging parent who needs help. The joy of finally getting to that empty nest stage is replaced by the sobering realization that another season of caregiving has arrived.
Prioritizing the good/better/best choice for helping our loved one can often mean setting aside things that are good/better/best for our own lives. And thus grief and stress step in. We're doing what we chose to do, and gladly, but there is a personal cost.
Your thoughts on support groups and getting help are very important. Grieving for our personal loss, even for a season, is something that we need to recognize and acknowledge as something valuable that we chose to give up.
We wouldn't change the decision to be our loved one's caregiver, but we need help with the grief. It's a subtle thing.
I hope this makes sense. :-)
Blessings,JoanCaregiver at Homehttp://www.CaregiverEncouragement.com/
Andrea
Mar 12, 2008 Suggest Removal
my mom is in the "moderate"stage of alzheimers.she is still at home with my dad.I know what carol is saying about grief.I already feel it and coming to terms withthe "long good bye".I feel we have already lost her in so many ways,her spirit,her interaction within a group of people,as her daughter,it's a different kind of lose,it's hard to explain but as I am now a wife and mother with little ones,I along with my brothers will assume the role of "parent" in the future.as time goes by,I may be able to express myself and feelings more clearly.
MindingOurElders
Mar 13, 2008 Suggest Removal
You both have eloquently expressed what most of us go through. I hear from many who thought they would retire and live a part of their lives as a couple, perhaps traveling, only to find themselves back into caregiving.
Yes, we make our choices out of love. But we have to take time to understand what we are giving up and to deal with that. Otherwise, we may be laying groundwork for deep resentment, and not even be aware of it. Talking it out with those who understand can do wonders.
Thanks so much for commenting.Carol
6yrs ago,my mother in law passed away from cancer,it was horrible to watch her suffer,and just this past xmas eve,my father in law passed away of a stroke.we were always there for my husbands parents.we have already discussed my involvement in the care of my mom.I live out of town,so I can't be there all the time,but my husband is so loving and caring and he knows that there will be times when I've got to be there for my parents.It is very important to have a wonderful spouse.As I mentioned before,I have two little ones,so I don't ever want to take away valuable time from them either.It is so difficult to watch your parents age and go thru tramatic life altering events such as alzheimers.
AgingCare Editor
Andrea, you're right: having the support of a wonderful spouse is a blessing. His love and understanding will help get you through the tough times (as I'm yours helped him when his parents were ill)
Andrea, I have to second that. A supportive spouse can make all the difference. You supported your husband and he supports you. Watch for our "sandwich generation" article, as you certainly fit into that demographic.
Take care,Carol
thanks carol, I will watch out for this article.I have been on this site everyday and reading a lot of the articles.it has been very helpful.
I'm glad, Andrea. That's what we're here for.Carol
I have also sent the link to my brothers.
copeing
May 7, 2008 Suggest Removal
Thanks for your articles my father in law passed away 3 yrs ago with cancer. Now my mother in law has cancer also (bone) Is it normal for at home in hospice care for vomiting blood is this a normal occurance? Please help me deal. coping
If the hospice nurse and the physician are aware of the blood, I'm sure they are doing what they can to stop it. Please talk to them about it. Their mission is to help dying people live as comfortably as possible, and vomiting blood is certainly not comfortable.
Ask them what else can be done for her comfort. Bone cancer is horribly painful (my mother had it, in the end). The only people who could control her pain were hospice. The found a way, and she was comfortable until the end. Sometimes, it's trial and error. Please keep us posted on how you are doing.
Carol
A certain area of the brain slowly degenerates, leading to a lack of dopamine, which can result in Parkinson's disease. Read the doctor's full answer.
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