As a follow up to the "On our own timetable" blog, I invite you to log onto the home page -www.thealzheimerspouse.com - and read today's blog - In our own way. I believe it applies to all of us trying to forge a new life away from the Alzheimer world.
I am nowhere near to the "single" life (at least not that I know of at this point), but you are so right. I don't think I could ever become a traveler (well, maybe a few places would be nice!), never was a joiner, not a "clubby" type. There's absolutely nothing wrong with those things if that's what works for you, but I've always enjoyed my solitude. I'm a homebody. Now when I reach the point you have, I don't know how I'll feel about it - my life & my attitudes have changed so much already, it wouldn't be surprising if what I enjoy changed also. I realize there's a big difference in aloneness & being lonely, but I will have to take time to figure out what will suit me best, what will be the most fulfilling thing for me. I do feel pretty sure, though, that there will be no more "relationships" for me - whatever time I have left will be for ME! Selfish? Maybe, but I think peace & quiet will suit me just fine. I sound very cavalier about it right now, don't I? Well, we'll see!
I felt the same as you before Sid went into long term care; before we were separated forever. I felt that I would enjoy my solitude, be able to keep myself busy, and that "peace and quiet will suit me just fine", as you said.
After I emerged from my 7 month long "rest" from caregiving, I found that all of what I thought had changed. I found that "aloneness", as you say, is fine for awhile, but then it quickly turns to "loneliness" and activities that include other people is desperately needed (by me, anyway). As I said in the blog, we have to find what is best for us individually.
But you are correct in assuming that your emotions and needs will most likely change after the burden of full time caregiving is lifted and you have fully rested from it.
Joang, Great article. We have so much in common--we placed our husbands about the same time and we love knitting. I realize I desperately need to be with people. The Alz groups here have socializing with dinners etc but I want to be with people who are not related to the disease. I have found most of my friends "before" have gone. I am still finding it difficult to push myself out of the house to reconnect with the world. I have a friend whose husband passed 3 years ago and she is never home--she is going all the time. she says when she is home the loneliness sets in. I enjoy my home and taking care of it. I do not even mind cleaning and maintenance chores but somehow there has to be a balance between frenetic activity and being in the house alone. Even tho he is placed, I am still feeling incredibly burdened by the disease and visiting him. I am hoping the gray cloud lifts soon. Thanks again for your input.
I submit that this life after FT Alz caregiving is uncharted territory for pretty much all of us, and--no matter what you THINK you might be like in that new world--you will likely surprise yourself. We get there bearing the scars of the journey behind us, and it has changed us in ways that we aren't necessarily even aware of until we start trying some things.
I agree. I think it was Wolf who said that after dealing with this disease, we will never be the same again. I find I'm left nervous about another curve ball coming my way.
I am still trying to find my own way after 3 years of placement. I do not have a clue where to find it. My brain tells me to get a life but my heart still thinks he just may get well and everything will be like it used to be. Maybe I am the one that needs to be in the NH for mental issues because I sure can't seem to shift it in high gear to get a post placement life. I do go to my grand girls school functions and out to eat with them but when I realize I am enjoying the function, Mr. Guilt creeps into my thoughts. For sure the ALZ monster still has a hold on me. I will keep trying but my "get up an go got up an went" so should anyone see it out there please send it back to the mountains of NC because I desperately need it. Thanks for the blog Joan it gave me some determination to find my way.
Everyone on the "outside" who thinks they can tell us how to act, or they "know how we feel" because their mom or dad had it, and we should just chin up and "choose happiness", should read this blog and our comments. I am so sick of them.
Yes yes yes it is hard to see any loved one with dementia, but WHY is it SO hard to understand the difference when it is your spouse?
Tonight I found a quote that really struck me. It was advice to a woman who suffered a late miscarriage: "Don't listen to those people who suggest you should be over your daughter's death by now… They live on Planet Earth. You live on Planet My Baby Died."
We really do live on a different planet from most people. We came from Planet Earth, so we know what it is like there. But now we live on Planet Caregiver, on Planet I've Lost My Spouse. We had no idea what the conditions were going to be when we landed (not voluntarily!) on this planet, and now we have to figure out how to live here. And it's made more challenging by the people from "back home" who have no idea what our lives are like, but who feel free to tell us how we should be acting "normal", when we're trying our best to survive in an alien environment.
Joan, thank you for another great blog. It has a lot of food for thought.
Joan--First, let me say that if you join in on exercise classes at the gym, you will make new friends. The reason you have the earbud situation must be because you're working out on the machines. The classes were my main form of socialization during the years that I was taking care of Steve at home.
It is great that you're looking for new activities and critical to do so now. Based on my experience, when the person with dementia dies, the caregiver is not only officially single, but also, has "lost their job". It's sort of a double whammy, which an insightful friend pointed out to me recently. So this period of time, while your responsibilities toward Sid's care have lessened, allows you to get started rebuilding your life.
I hadn't thought about how much the job loss part would affect me--I always focused on losing my beloved. I retired from paying work about 15 years ago, partially to care for my parents. Then 5 years later, it became obvious something was wrong with Steve. So it has been 15 years since the only one I had to be concerned about was myself--and it's taking some adjusting to get used to that. It's also taking effort to get back to some of my previous activities--like reading and watching TV. Giving those things up due to lack of time for so many years, they seem a bit foreign now. Strange.
I think in Florida you will find more year-round activities going on that we Northerners have. Many of my friends leave town for the winter months because they have homes in warmer climates. So the travel option as you described your friend doing will be my plan for next winter.
Jan K---a few weeks ago my twenty something daughter gave me the book of advice columns that has that quote---she had highlighted it---and that quote plus some others from the book have been on my mind ever since. We placed my DH this past fall, and my daughters have struggled with how many of their friends just don't understand why a 20 something year old would grieve over her father being in a nursing home! They say things like "my grandmother is in assisted living and she's happy" or "why are you still upset, didn't that happen last month?" and of course the favorite---"you just need to get over it". I feel like most of my close friends at least acknowledge that I am grieving, my daughters' friends are for the most part clueless.
Sorry Joan, a little off topic, but I guess one point is our entire family is struggling to find the new normal, and in our case I sold our house and downsized the same month we moved my DH---all part of an overall plan, but still, pretty traumatic, so I am giving myself unlimited time to regroup to whatever the next "life on dementia planet with loved one in facility" looks like.
So well said Joan! Gosh, how I LOVE your posts. I often feel you are writing my story. Since my husband was placed 2 1/4 years ago, I have really struggled with trying to figure out who I am now. I still struggle with that. I agree with others, it is big full time job being an Alzheimer's caregiver and then we are unemployed so to speak. What does getting on with my life even mean? How do I do that lacking energy and motivation? My friends are gone and it takes huge energy to try and make new ones. Even though my responsibilities have changed I am still totally immersed in this disease and have a strong advocacy role now. I think you are right Mary75 in that it was Wolf who said we would never be the same and I so appreciated reading that as for sure that is my reality. We do need to try to get some kind of health back for ourselves in our own time and own way. I am SO grateful for this site and all of you! Blessing to all of us.
Yep, Joan ... truly each one of us must proceed in our own way. For me, it took a bout of 'delayed depression' toget me to move forward. Last month, 7 months after placing Clare in her ALF, I unexpectedly experienced a one week pity party. Hearing that Clare had kissed another member of her unit on the lips and hugged him tightly thinking he was me was tipped me over the edge from being emotionally fragile to seriously depressed. But, fortunately, I climbed out of my funk after one week, made myself a "To Do" list, and am now finally getting on with my life. I went back to the gym 3x/week, back to bowling, started writing again, and just went back to being a person again ... albeit a single person. But you are 100% correct, Joan ... we each must do what we each must do. As with everything else about AD, it is what it is.
One step forward then two back. That's my "life after". Joan, thanks again for your insightful blog. I have widow friends but they are not "dementia widows" so our situation is not the same. When people tell me he is "better off" what to say? I agree, but the hurt of being alone isn't helped. I have been in a water exercise class for over ten years and when I can I attend and find it helpful for mind and body. I'll be going with a church group next week for three days but always find myself just as lonely in a group. In a grief share session it was stated you can't run from grief so lean into it and allow it. This group at Joan's has been more helpful than I could have imagined when I first looked in those years ago. I was scared to death reading what others were going through and that I might. Now it is the most helpful part of this place where I live now "widowhood planet".
joan, as usual, you have hit the nail on the head...........we are the same age and I have just completed my first month alone after placing my husband. I'm plodding along, contemplating selling the family home and finding something smaller but it's such a daunting job thinking of the clean-out that will have to happen. I do enjoy my yoga class and book club, but what I find especially difficult is being invited out by former couples friends - I know they are well-intentioned and trying to be supportive, but they don't realize how hard it is to see them getting on with their normal lives and realizing I will not have that again. Of course, I hold it together while I'm out with them but it can be painful. I even feel somewhat out of place at the caregiver's support group because technically I'm not a caregiver anymore. I'm not a widow, nor do I have a husband in any real sense of the word - it's like living in limbo! Am now thinking that reaching out with volunteer work will be the next move for me.......one baby step at a time.