Please enter a search term to begin your search.
- All Categories
- Taking care of you
- Dementia
- Personal care
- Caregiving 101
- Caregiver stories
- The spiritual perspective
- Upcoming events
- Caregiver statistics
Become a Free Toghers Member
In less than a minute you can:
- Take any free assessment
- Ask a Caregiver Coach® any question
Get your free Toghers Tip Cards
Conversation with a former family caregiver; Adele's story
Adele was a loving caregiver to her husband Paul during his journey through Alzheimers Disease. She developed, as many caregivers do, her own life-threatening illness through this time and beyond – which will be content for another story. Below is an interview I conducted with her almost two years after her caregiving role ended.
A Prologue
I met Paul and Adele in my office for the first time as they were exploring the option of adult day care for Paul. Adele had very short hair – I thought a bravely stylish cut – that highlighted her kind face. I later learned that this was the result of her chemo and bone marrow transplant that had occurred just months before. If she was frail, she didn’t show it, if she was struggling with Paul’s Alzheimers I wasn’t aware of it, and she impressed me as much as Paul did.
Paul was a calm, gentle soul with white hair and full matching white beard and kind eyes. Years later I heard Adele describe Paul’s kindness as “palpable” – I thought it a loving, and accurate description.
They sat in my office as I explained about the Day Program where I was the Director. What a typical day was like, what kinds of activities we did each day, and who came to the program – participants and staff. While I don’t remember all the details – one thing I remember that made the most significant impact on me was Adele’s complete comfort in letting Paul make the decision about attendance at Care Link. They were just visiting, she said, the programs in the area, and then he would decide if he wanted to be there. There was no sense of urgency, no need to control the situation – just a desire to find a peaceful place for Paul.
Adele has since become a very dear friend – here’s her interview:
How long were you a family caregiver?
I wish that were an easy answer….when someone has Alzheimers Disease you begin caregiving before you even realize it…repeating things, looking askance at the other person…what’s going on? Who is this? Nine years.
What is the most important decision you made in your role as a caregiver?
My immediate reaction is to go to the practical…when to place him in Assisted Living when it was time, but the most important decision to make for myself was understanding that I was leaving a relationship and entering more of a parental role that would change everything in our marriage and it’s function and come to a place of clarity and peace about what that would look like…..with great resistance and sadness.
Would you have done anything differently?
I wish I had had better tools to handle what felt like anger and resentment on my part towards losing my husband, partner, best friend and lover. I think he felt that acutely though I wasn’t cruel or mean – lashing out – but I wish I could have been a way of being more patient.
Did you ask for help when you needed it?
Sometimes. Sometimes I was eager for help, sometimes I procrastinated thinking I could handle things….it wasn’t bad enough yet, and somehow I could cope with things. Sometimes I didn’t know I needed help so I didn’t know how to ask for it. When you have this ongoing demise you adapt and find yourself in a pit and don’t even realize how far you’ve gone. When I did ask and it came I was extremely grateful.
What was the most helpful resource you found to support you in your role?
You
What did you do to take care of yourself while you were a caregiver?
That’s a fine line. I was trying to get on with my life as I knew it but I was also dealing with my own illness, trying to work, handle all of my responsibilities. Some strange level this was taking care of myself…learning new things, expanding my horizons. But I think the greatest resource I had were my dear friends…have lunch with, laugh, smile and have a regular conversation talking about life and what was going on in the world. It was like pulling teeth to go get a facial or a massage and I really could have used that kind of pampering ….but it felt like an indulgence, I was worried about money. So I focused on close relationships with friends.
Do you think being a caregiver enhanced your relationship with your care recipient?
In a weird way it did. There was more intensity between us, it wasn’t necessarily positive and I was having to constantly hold up a mirror to myself and I had to constantly ask the question who are you, and who am I in this relationship. For me it on a much more personal level and I have no way of knowing what was going on for him.
If you could share one piece of advice to a new family caregiver, what would that be?
This is a tough one. Try to see that person as pure spirit. What is happening to their body or mind, the physical diminishment tends to be the focus, yet if you can begin to see that that person is really a spirit beyond the body and to look at who you want to be in the process of recognizing that.
I have had to learn that when someone is unrecognizable in their body for whatever reason…tubes, catheters, illness – maybe this person is becoming more of who they are and we just don’t know it. If we can see past the physical and into the spiritual – if we could begin to see the life that still exists beneath the surface and there is something profound that is going on within that person and although we don’t see it or understand it – see that that person is in transition, honor it respect it and really love that person – and let go of the physical horror of what you see.
Is there anything else you would like to add?
When you lose….when that person becomes unable to fulfill their role - parent, mate – it is so important to step back from our identification from that person and ask how can I learn from this, how can I be a better, stronger person from this experience. That is a must. If you don’t become much more self aware from this process you will become overwhelmed with grief and loss and sorrow and miss the opportunity to become stronger better and more your own person than ever before. And understand the beauty in letting someone go. Let them leave their role, let them leave how you’ve known them, don’t insist that they hold on.
Looking at caregiving from a learning and forgiving opportunity – looking at it as many, many moments of truth where you see something. You can put it out of your mind, or you can actually listen to yourself internally and ask what you can learn from it and how to be the person you want to be in this experience. There is a tendency to make it about the other person – what they need, what you need to do next in a linear way, but it’s circular because the issues continue to come up. Loss of identity, loss of a specific role….each time you come to a difficult place – ask who have I become because of this and make it dynamic.
Comments
s2gex@msn.com says - Thu September 17, 2009, 09:58:10
This is a wonderful interview Anne. I understand what Adele means when she talks about seeing the spirit behind the "outer" body. I have always resonated with the saysing "we are spiritual beings having a human experience". I often relate to babies in the same way, connecting with them through their eyes and seeing the spirit beyond the body. There is a way of being with that which is comforting beyond words. I find it with my horses as well.
Leave a Comment
- Required fields are marked with *.