I thought about putting this under the Caregivers—Placement Thread or maybe the Widows & Widowers Thread, but decided it needs to be here to be the most helpful. I’ve discovered another side to the matter of Placement (and Loss), that we haven’t actually touched on. That is the great emptiness in our days after our LO has left the premises. Suddenly all our routine, our schedule—yes there was a pattern even if it was cockeyed—has disappeared. Some time is demanded for the arrangements of Placement, of visiting, or in the case of Loss-, the funeral or memorial and related things. But those come nowhere near filling the void. There is a great void within us that we have to cope with, but we are suddenly also faced with endless hours without any frame and a list of mundane chores to be done—whenever. I had DH’s Placement all worked out, until it was delayed. Then we had an Altercation, and he went to the hospital for a med. Eval. After other complications, he was Placed 2 weeks later. I expected the hollowness inside when I went home that first day (at the hospital). I expected trouble adjusting my sleep pattern (4 hrs a night for many years). I did not expect the void in my days. There are chores to be done—whenever? I can lose hours on the computer or in a book. There’s always tomorrow. Adrift, and that’s not good. If I’m going to live my life fully I need to have some control over it. When we were in the working world we had a time to be at work, a time for lunch, a time to go home. We planned our weekends, our vacations. Right now I have a few time slots when I have to do a certain thing—2 times a week when my helper comes, visit DH, feed the cat, go to the store. There are other things I have to do, which mostly still happen, whenever—or not at all. I wasn’t expecting this situation. When I quit working to go on Disability in 1983, I expected needing to set up my own schedule---planned for it. This time, after 24 years of caregiving I was focused on DH, his world changes and needs. I wasn’t at all prepared for my world changes to be so huge. It’s been 100 days since Placement and I’m still far from settled into even a rudimentary plan for the week. I am trying to establish command of my time. I have things I want to do and people to see. This is a major adjustment which I have to make. It’s a major preliminary step to building my eventual After. Another bump on the Dementia road for us Caregivers, but one we can watch out and maybe prepare for.
Carol-another excellent post. Of course you are correct. After spending most of your life with another person you suddenly have lost your core and identity. Often happens when folks retire. I don't know how well anyone can plan ahead for a complete change of living. I wish you well in your search for YOU.
Yes, an excellent post - Carol. and I agree with bluedaze. I think it happens to all of us - in some form or other. We were in "structure" with our spouse - in my case 50 years - and there is a deep empty void when you go from being a "pair" to being a "single". When we were young "change" came pretty easy - not so easy as we are older. It has been almost 2 1/2 years since my dh passed and we were together 24/7 working in our businesses. I still have trouble filling my days with meaninful labor. I also put aside - until later - many things that do not have to be done "right now". But, what the heck, that is ok. The dust will wait - I want to go - and spread my wings. So, mundane house chores are low on my list. Tomorrow will be soon enough....today, I am alive and want to see the beauty of the world we live in ...while I still can..
Carol between coping with CMT and Alz you've had more than your share of the hardships life can deal out. While not a widow you are grieving and that's the most natural human reaction given what has transpired over the years. How we grieve is a function of all our life experiences, our faith and the nature of our loss. I sense by the brief bio under your name your coping skills have been stressed and tested for years. It's time to let yourself take a deep breath, realize that there is no normal, no timetable for grieving. Healing takes place gradually and can't be managed, forced or rushed. Just be good to yourself don't judge yourself harshly and let things evolve. I wish you some joy and happiness in the not too distant future
It's on the bottom of my list :-) Like you said, Lois, the dust will wait. It's been 38 months for me and after being nearly housebound for six years, I relish being able to come and go and do what I want to do.
I think this is a timely post....I have and am in this situation and my DH is HOME. He is not a lot of bother in that he doesn't get into things...and as you say there is so much to do and I guess I have been rebelling. I just started to clean the master bedroom...get things sorted and moved DH into the guestroom...so I could just pull things out and work at my own pace...and my pace is taking forever.....
Carol---Your post reminds me of my mother's experience so much. She---like you---has physical limitations and cared for my father (who had several health challenges) for at least 15 to 20 years before he died. The last several years were very intense and their lives focused around his medical needs / appointments / treatments / surgeries. After he passed, I've watched her responses and realize she hadn't been able to think ahead or plan for life after. It had been over a decade since they'd been able to travel anywhere and during the last couple of years, nigh to impossible for her to only occasionally get away for more than a couple of hours on her own. I've often wondered if she spent the last number of years so focused on Dad's care that it was difficult to even imagine that she'd one day be left with time on her hands that didn't get sucked up with care responsibilities. She was quite aware that she'd likely outlive her husband but preparing for a life after must have seemed like a far off possibility.
Her physical limitations confine her close to home-----some years ago her grandchildren persuaded her to get a computer and that has been such a source of connection for her. She has enjoyed being in touch with family and friends via email and marvels at being able to access so much knowledge and information on the internet. Still, it hasn't been an easy time for her adjusting to her own limitations and the loss of her husband. She has always been able to make the best of things but I think this unexpected void (even though combined with relief that my Dad's sufferings are over) took her by surprise.
I've always read your posts and marveled at how you've coped with multiple challenges. Thanks for sharing so openly and honestly to help the rest of us . . .
Tears well easily these days, rachelle,and your post nailed a lot of how it has been for me. It's kind of funny that when I wote the post to start this Thread, I was intent on pointing up the lifestyle void that looms when our LO is gone--whether Placed or passed. We have discussed the heart hollowing void a lot and the grief and emotions attached to Placement or Death, but we hadn't really said much about the day to day effects when the Caregiver suddenly has no more structured day to day pattern. There can be comfort in having that basic pattern while trying to cope with the grief.
Long ago, I tried to connect with a face-to-face support group (early 90's). There weren't many and what there were here were multi-disease mixed parents/children Caregivers and hardly any Spouses. I found one, but when I enquired about joining, once I asked about the accessibilty of the site of the meeting and I explained my need, I was told I should look elswhere because my presence could likely stiffle the other members from speaking freely. I have tried to refrain from saying much about being disabled myself, because that's not why I'm here. I think I most generally have succeeded in sharing what I know of Caregiving and gleaning support here, as a Caregiver.
It had just occurred to me that those caregivers here contemplating Placement or facing loss soon, and the newer one just beginning or in the earlier stages might benefit from knowing that this huge void in day-to-day structure can happen and maybe they can be more prepared for it than I was. It's not about me, it's about comig off the Dementia Tunnel road, past the Placement Fork, past the Lost End and working on healing and building an AFTER for ourselves.
Sounds like a map of places many of us have visited like El Camino Too Real or Route 666. I've actually driven through Placement Fork where I lost my sense of direction completely.
I'm just wondering, did you explain to Stiffle Lady that if she couldn't handle it you could take over? I can see her point though. Your presence can be intimidating to emotionally crippled people who don't bother to find out you earned a master's degree and are willing and more than capable of helping them. Their loss.
Carol, I can't imagine a facilitator who would do that. I am so lucky that I attend a support group where everyone is so supportive. Our last meeting, we had a lady who had lost her grown daughter a few weeks earlier. It did not stifle anyone's ablility to talk. I really don't understand that. Those of us who are widows are as welcome as those dealing actively with Alzheimer's.
You are right about the structure of our days. I have always needed structure and have really worked on it in the 6 months that Gord has been gone. Despite that, I too find that I while away many an hour with just sitting at the computer.
The journey after the journey is only different. It is not as hard as the first journey but it has it's own challenges and they are tough.
I can't imagine anyone being so heartless either! These are the times when I truly hope Karma is true.
I guess for me I didn’t have to worry about how to fill the daytime void, as I visit with Lynn every day. So I still have a structured day to day pattern. I spend the better part of each day with Lynn and I have done so for over three years now; it is my “new normal”