This is my first post, though I've commented elsewhere. I hope it's not inappropriate. It's about life ambitions.
I'll start with a story, from a time my wife and I were visiting an independent living facility (living there, actually, but that's a different story). We were sitting with a few people we'd recently met; Jane was telling us about a friend of hers whose husband had Alzheimer's. As Jane described the situation, her friend was unhappy about being a caregiver for her husband, and she was struggling to get through each day. Eventually, through prayer and hard thinking, her friend realized that caregiving had become her role in life. That was her new self: a caregiver. As soon as she accepted that, things became easier, and much of her frustration went away.
I sat there, nodding, but in the back of my mind I was thinking, "That's not me."
That conversation happened a few years ago, and I think I've been a good caregiver for my wife. (She lives at home, and I'm her primary caregiver, though I have professional help come in a few times a week.) Still, I feel this reluctance to define myself as a caregiver above all else.
I used to have ambitions about what I'd do with my life. I still do, and they're very hard to give up. I teach in a classroom, and I mentor students as they learn and grow. Another part of my job involves doing scientific and engineering research, where our work might translate into small improvements to people's lives. I once thought I might make some kind of general contribution to society by writing a book (even if not a bestseller). And so forth.
For me, caregiving is difficult not only because of the day-to-day activities, but because it expands to take over everything else, other things that I've thought were worthwhile. I'm not asking for advice with this post; I just wonder if I'm alone in thinking this way. At times these thoughts strike me as being selfish or at least self-centered, but at other times the thoughts just seem very ordinary, the kind that anyone in the world might have about where they're going in life.
I do not think it's selfish to think about other things. Remember the words about "certain unalienable rights; that among these are life, liberty, and the pursuit of happiness"? As caregivers to a large part we lose our liberty and the ability to pursue happiness. I don't think it's selfish to mourn those losses, and to try and figure out a way to regain them. (Otherwise they need to change that famous statement to say "...unless you are a caregiver.")
I think that the very fact that you are thinking about these things means that you are more likely to get through this with some parts of your life and some parts of yourself still intact.
And no, I don't want to accept "caregiver" as my sole role in life, either. II think we all have more to offer to the world than that.
RSA, very well said. I would expect that Wolf will be responding shortly.
Others have expressed in the past, what you have just said. Personally, I feel that I cannot/will not give up my "ambitions" because if I do, then what will I have to fall back on in my later years.
Thanks for your comments, they were very well stated.
Hi RSA, No, you are not alone in thinking this way. Like you, I am reluctant to define myself as a caregiver. I was drafted into this army so I do the job that is assigned to me. Like most everything else I do, I try to do it well and I invariably get interested in the details of the job. But as an overall endeavor, I have little interest in it and resent the fact that (as you put it so well) it has expanded to take over everything else. Let me be clear. I am NOT saying there is anything wrong with caregiving. It is a noble pursuit. But it's just not my thing. The reason I am able to be so active on this site is that it is called "The Alzheimer's Spouse" (NOT "The Alzheimer's Caregiver").
RSA, As I thought about your comments, I honestly feel that because you are not defining yourself solely as a caregiver and "thinking about other things" is actually a huge sign of strength. The fact that you are doing this means that you have not lost sight of yourself in this disease. This I firmly believe is the key to survival. When people lose themselves in this disease in my opinion it is a bad sign--as it means they have lost themselves. I have actually met people like that and it is very, very sad. During my husband's illness I did maintain many of the activities that gave my life meaning. I had my knitting groups, my little job at home, and involvement in my church. All of these things helped me in some way to "survive." I cannot say I hated being a caregiver as I was doing it with my kids and later with children in school but to be caregiver like this was not what I signed up for. I too felt much resentment in having to take care of him. Resentment really is all part of anger and I was never real good at expressing anger although I did but it was not in a healthy way. This is one big reason I placed him because my anger and resentment were coming into play far too often and he sensed it. I simply could not control that part of myself at that time try as I might. Placing him did help as much of that was gone and I could visit him with a much more positive attitude.
So well said RSA. Certainly, you are not alone in thinking as you are. I respect you for your stance on this and thanks for sharing.
That was one of my biggest challenges - how to hang on to a semblance of a life when my husband had dementia. I did a poor job but did do a great job supporting and advocating for my husband. Nearly killed me but I did it.
I have posted elsewhere I lost myself to the disease. My husband died two weeks ago, and now I wonder who I am since I can remove the "caregiver" hat. I have been a caregiver all my life even as a child as my sister was 10 years younger. Then full time career as a nurse (practitioner and professor) then 8 years of dementia care.
I know now the slate is clear so to speak. I have many options. One I truly struggle with is I have lots of experience both personally and professionally to help other spouses dealing with Alzheimer's/dementia. On one hand I know I could set myself up as a consultant and another part of me is so sick of this disease I want nothing to do with it. That might sound harsh but it is how I feel deep down.
You mentioned potentially wanting to write a book. I have had a life long dream of writing a non academic book and managed to take a few online courses over these last years. I am starting to pull together those writings and just signed up for a three month focused writing course. I plan to write a memoir.
I really appreciated your comments RSA as well as Jan, Mary, myrtle, and CO2.
Thanks for commenting, everyone. I really didn't know what to expect. I'm heartened by your encouraging words and knowing that you've been through something similar.
katherinecs, I phrased that part about a book badly; I actually did finish it, with a lot of writing while my wife's health was declining but before the dementia happened. It was therapeutic for me, a little.
Loath being a caregiver. Survive it. Register (for later) that your sacrifice is earning you mega bonus points in every philosophy and every faith. Feeling guilt would be ridiculous. The bucket loads of dirt on your doorstep because you couldn't land the triple lutz from a pike position without a tiny splash because you were renting yourself out as a punching bag - is offset by the cubic miles of bonus points. Sorry, I mean volunteering as a punching bag.
When your spouse trudges around pulling the stuffing out of the sofa and eating it while complaining that you never care about them the thing to remember is that they have a really bad disease - which is why they sometimes behave like knuckle-dragging troglodytes. But I can clear that up for you.
The luckiest person in the world has someone who hangs in with them when it's all coming apart. When I snap my fingers and they are whole again and I show them the movie of everything that really happened - then you will know because the hardest heel will cry Niagara Falls in gratitude I have zero doubt. The whole movie of everything the way it really was. Think about it the other way around.
This experience exacts a heavy price. We all know that. And there is life on the other side because I'm finding it and talking a bit about that on the widow thread. Good post and topic RSA because everyone ends up facing these questions.
My answer is your ambitions are your path. Now if you're like me, you'll need some time to glue your ambitions back onto any other pieces you can find. Set your ambitions now to surviving this as best you can. Howl at the moon for what is lost and what you want. You will hear those echoes later as you pass them.
Even as a professional in the caregiving world (RN), I never wanted to just do that and nothing else. Alzheimers is all-consuming, and if you're not very careful and if you don't fight very hard you will find yourself just sucked dry of everything that makes you a real person. And it is hard to fight it, because you're so tired and so busy, and sometimes it doesn't seem worth the struggle. I would say that it's important to care for one another, but that doesn't necessarily mean that you have to give every thing away that makes you a human being--in fact, I don't think you should. And as I've said to patients' families a million times...placing your loved one does not mean that you're not taking care of them...you're just taking care of them in a different way.
Wolf, I have to say that I love to read what you have to say. It's more than the raw honesty--it's the poetry and passion in the way you express yourself. Thanks.
I hate being a caregiver for my husband. I hate, hate, hate it and it is really showing as he gets worse. I resent him more and more as time goes on. For me the years that he hurt me are ghost in the background eating away at any compassion I might have for him. The other day I was trying to help him do some work on our porch and lost it with him saying something about it use to be easy for you. I left and went to dump the tanks when it hit me - payback! For years he always made me feel bad because I did good in school and he didn't. Made me feel inferior when we would work on projects together and I let him. Isn't is sad how without realizing it things will come back to bite you?
I am doing PT for my shoulder and my hip. What I am finding out is the reason for my gradually getting clumsy - out of shape. The PT is working on balance issues and strengthening my muscles all around. Really sad when you can't stand on one leg! He had me do weight exercises with my legs today - I know they will be stiff tonight and/or sore tomorrow but it felt good. Weird as it sounds, I look forward to the day when I can buy a bicycle and ride, just hope I am still in condition to do it. Right now I can't because he doesn't like bike riding and would not like me taking off (I know I could do it anyway since I leave him for PT).
I loved working in the hospital (medical) as a nurses aid nights because of patient care but also just talking with them when they couldn't sleep. But it was OK because after 8 hours I went home, left the 'caregiving' behind.
I've written several times here exploring the lifelines and the threads that run through the idea of an ambition for ourselves and they were very long even for me and made me see that I have a lot of ideas here. I wanted to answer RSA's question more fully and offer him some of the thoughts I've had and each time went racing off deeper and deeper.
So I shut the thing off last night thinking tomorrow was the weekend and I might have something more distilled to offer. I woke up early this morning. I got up and made coffee at the crack of dawn and sat here looking out. It takes me about 30 seconds to catch up with the fact that nobody is trying to reach me. And then the picture I had cut out of the newspaper about a month ago crossed my mind.
It's three 10 year old girls on one of those tire swings. They're all hanging on and are all screeching in delight. The moment is full of life and promise and fun. It's exactly the sort of anti-picture of my own life. I have a lot of blank canvases and it took me no time to decide on a 20"x16" portrait size and now that I've eaten my own baked apple pie and ate my left over baby back ribs - I'm looking at it on the easel. I already have most of two of them in pencil and parts of the tire swing. It's the first time I've really worked since Dianne passed a year ago February.
So, RSA, you said raw honesty and passion. Those and as deep and sincere a truth as I know are my guiding lights. They are in relationships, they were in my professions, and they are the essential elements of why I breath. So instead of seeing if I could say something more useful to you about ambition in life and being under siege - it turns out I spent the day instead living one of my ambitions in life.
...
Caregiving is a spiritual journey in which we learn about ourselves while our world is flushing down the toilet. You can portray your crappy or grandiose self-image any way you want to - the fact is that you are engaged in self sacrifice for your partner. It's true there is little choice except to leave them and it's true that the experience is genuinely terrible. That changes nothing. It's true that I screamed and stormed around and was even mean at times. That changes nothing because I went right back to trying to do better, trying to find compassion, patience, fortitude - anything to keep going.
The early and high functioning years I think of more as early experience with the creep of dementia. I didn't think in the terms I speak with now. Even though the glacier of what we were and what she was, was melting; the massive glacier was still there. The intellectual understanding of Alzheimer's only taught me not to hope and in broad terms what was coming. No part of me understood then that as the trickle of things leaving the mind continue, the nuance, then the personality, and then the basic functions all keep trickling away. I'm sorry to say that anyone who doesn't understand my use of such strong phrases as 'our world flushing down the toilet' - will understand too soon.
I can feel your pain clearly RSA because I know exactly where you are. At least, I remember thinking very much in the terms of your post. It takes time to become numb to seeing your castles go down one by one. It became the mantra of my life for years that as we sunk to a lower level I often missed the last stage we had just left, although I never caught up with valuing the stage I was at.
One day she loved corn on the cob and the next she couldn't hold two things right and so corn and ribs and everything else like that was gone for her - and gone for me. One night I woke with a start in the spare bedroom. Her face was right over me staring in the dark. "Who are you?" she demanded to know. Lots of Kodak moments.
I was just like any other caregiver. I survived it in what felt like the bottom of a deep hole. I ended up finding out I'd given up ten years of my life, didn't know the world I was in, and had a small basket of real issues like anxiety and depression. I have ambitions though. I thought I had them before but I realize aside from my work and my personal life, I had hobbies and interests. Caregiving taught me the difference between an interest and an ambition by showing me painstakingly how self interested my comfortable efforts had actually been. Not to punish me. Just pointing out the kiddie pool was now closed,
It's been months where I'm here fully in spirit. There's still clean up work but it is mostly smaller things. I took a very different approach with grieving but I suspect I would have ended up here anyway. I had this ambition in life from my second post in 2010 where I questioned if caregivers survive the experience as themselves. This place is littered with me talking about that which is why I suspect Mary in Montana mentioned I would be attracted to a topic like this.
Ambition in life describes an active action. Ambition is a demonstrated thing with a beating heart that's pumping - or it's coffe klatch. No amount of ambition is enough because any ambition includes the state of non-arrival - otherwise the word ambition would be used in the past tense.
It's the state of feeling ambitions tugging at you that I would describe as being healthy. My ambition was to genuinely feel the want of them again because by not leaving I chose to stay and by staying I chose closure and I think believing those are the values is what has set my course for some weeks to come.
I will be spending them trying to breathe life and innocence into these three ten year olds while they try to teach me what that is. In some ways, RSA, that is your fault.
I think the best advice comes in the form of inspiration through stories. Thanks for sharing yours, Wolf. I hope I can live through my experience with similar determination and strength. I also hope that those ten-year-old girls come to life on your canvas with the innocence and delight that you see in their photo.
In case anyone is curious, this is me, in a piece I wrote toward the end of 2013:
Things are different these days, but not too different. I'm take care of my wife in our own home again. I'm probably a little less naive, a little more aware of what the future looks like.
I happen to come in 10 minutes after you posted. Thank you for sharing your article. There are many words I would have preferred not to understand so personally in life. Words like poignant and rending.
I see what you mean about the best advice being in the form of inspiration through stories. I couldn't feel for us in the open way I was able to feel for you two while I read that story.
I truly believe my own desire to continue as myself in life (which I considered an ambition) along with a tempered sense of my own entitlements and obligations has helped me to rely on myself and later find a path to a tenable and even comfortable situation.
You're right, elizabeth, it was partly age that made me decide to move back to our house, which I'd been getting ready to sell but hadn't quite finished yet. Many of the other residents--we made a lot of friends in three months--were living the remainder of their lives in peace and comfort, physical ailments aside. I'm happy that they've found a good place. Eventually I realized that I wasn't ready to do that. Ambitions, maybe. It was also partly money. I went to a financial planner and we worked out a few possible futures, and he told me, "You'll have about ten lean years," where it would be touch and go whether we'd have any savings to continue living in the same place. That made me nervous. Another thing was that my wife and I had been living quiet lives in a small, isolated neighborhood (where we are again), and because the progression of her dementia was difficult to predict, I thought that living in a more social place would slow down the progression. That didn't happen. Maybe it was a poor decision to move there, or to move back, but you know the futility of asking these kinds of what-if questions about the past.
We still visit the retirement home once in a while, to say hello to the people still there. I thought it might be a little awkward, but I'm happy to see them, and they're happy to see us. There are little hiccups now and then. Once, as I was rolling my wife in her travel chair away from a group after talking for a while, one of the residents said to another, "She's really in bad shape." It's a little painful to hear pity for your early-50s wife in the voice of a someone 30 years older.
I'm glad that the piece felt familiar. I wrote it because I was having a hard time explaining our situation face to face with friends, and then I thought, "Okay, now what do I do with it?" It turned out to be a good solution.
Wolf, I've learned something about self-reliance in the past couple of years, and I hope that you (and eventually I!) will find that path to continue. Your writing inspires me.
Robert, I too loved your article. Tears came as I read your thoughtful words. I suspect many spouses of Alzheimer's/dementia can fully relate. Thank you sincerely for sharing this with us.
Thanks, myrtle, katherinecs, and mary. I've received a lot of well wishes from friends and acquaintances due to that article, but it's also very meaningful to me that other people in a similar situation understand and share some of the same feelings. Because it's hard to do that if you haven't been there--which everyone here has.
Robert.......Thank you for sharing your life...... with that wonderful article and your posts on this thread.
I've also shared my dementia trip here. Although we went through the same sad times as caregivers, I had it much easier, emotionally, because Helen was 80 and me 85 when things got bad.....We had already enjoyed the best times of our lives, and you are just starting what should be your best times.
Helen left me four years ago and now at 94 yrs, I'm living in a nice retirement community and there are many ex-caregivers here......Please continue writing and sharing your stories with us. ............................GeorgieBoy
Thanks, George. I'm happy to know that you enjoyed so many years together with Helen and that you're in a nice place now.
Some of my favorite moments in our retirement home were at dinner time, when my wife and I sat with two older men who had been in the service in WW II, one in the army and one in the navy. I learned from them, not just from their personal experience during a time I've only read about in history books, but from their perspectives on life.
Wolf, I love this paragraph.... "Caregiving is a spiritual journey in which we learn about ourselves while our world is flushing down the toilet. You can portray your crappy or grandiose self-image any way you want to - the fact is that you are engaged in self sacrifice for your partner. It's true there is little choice except to leave them and it's true that the experience is genuinely terrible. That changes nothing. It's true that I screamed and stormed around and was even mean at times. That changes nothing because I went right back to trying to do better, trying to find compassion, patience, fortitude - anything to keep going." You have such a knack for putting words to so many of our feelings!
RSA, I was thinking about the way age affects our life ambitions and wondering if your forward-looking energy may be fueled partly by your age. It looks like your wife was in her early forties when she was diagnosed with the brain tumors and you have both been living with this for about nine years, so you are probably younger than the average member of this site. We do have some younger members whose spouses have (or had) EOAD but most of us are older. When my husband was diagnosed nine years ago, I was 59. I am probably 15 years older than you are and I think I am still in for a long haul. I definitely think my age has affected my life ambitions. My outlook is party attributable to caregiver and work-related stress but a lot of it is creaky joints and what I see as limited time and opportunity. There are people on this site -- I am not one of them -- who say that age is "just a number," and since "we are only as old as we feel," we can regain our youthfulness by changing our attitude. So I question how many years of productive life I will have after this is over and that issue definitely affects my life ambitions. Of course, this may change when I come out on the other side of this experience.
I would be interested to hear if others feel that age has affected their life ambitions.
I was 77 when Ron died almost 20 months ago. I decided I would "go places and do things" for as long as I was able. When I am home I tend to sit and do nothing but watch TV or be on the computer until I "have" to do something. My life ambition would be to live on a cruise ship. After Ron died in July 2014 I did a 7 day Caribbean cruise the next Feb. In June I did a 10 day Alaska cruise-tour. In Nov and Dec I did 50 days trans-Atlantic and Mediterranean. Next week I will be 79 years old and in June I go for a 20 day cruise up the coast of Norway. After that I am considering a trip up the Amazon River in November. I guess I just can't stand to be home.
Mary, you remind me of this lady: http://www.usatoday.com/story/travel/cruises/2015/01/19/woman-pays-164k-per-year-to-live-on-luxury-cruise-ship/22030011/
It is the lady that has lived on a cruise ship the last 7 years to the cost of about $164,000 a year.
I am like you - sit at my computer and I don't get much more done. Laundry and meals are the most I do consistently - really no choice on them. Being 63 and starting our 9th year since diagnosis, I go between believing there is a future and trying not to think past today.
myrtle, your estimates of my age and my wife's age are on target. I do feel as though I still have a good portion of my life in front of me; age is probably a part of that. We'll see what happens.
Mary, I so admire what you're doing with your life now at your age. I'm just a few years younger and my husband and I had thought we would do a whole lot of traveling in retirement, but that didn't happen.
Do you go by yourself on these cruises? If you have any disabilities at all, how do you manage on land excursions? I have a problem with my back so sometimes must use a cane. I would love to be able to do some of what you're doing. And I think I would be fine by myself on a. Rise, though I have never been on one. I never really wanted to do cruises. I liked to immerse myself in one place at a time, but the idea of a river cruise is beginning to,appeal to me. Please let me know how you do it.
In Feb and Nov-Dec last year my widowed sister went with me. Alaska in June I took my 2 Daughters. This coming June to Norway, a woman I met on the Alaska cruise is going with me.
So far I have been able to get around quite well. I have been walking in my neighborhood now the weather is better. I thinks that keeps me limber enough to handle most of the land excursions. We didn't sign up for anything that was more than 4 hours, and on the Mediterranean cruise we did HOP-ON HOP-OFF busses in a lot of the cities. A lot of people had motorized vehicles on the ship that they could just drive off the ship. Others used canes and walkers and went on excursions with them. Some trips require a lot of walking and some don't.
River cruises are great too. Ron and I did the Mississippi from St Louis north to Minneapolis when the Delta Queen was still operating. In 2006,our last big trip was a river cruise down the Rhine to Amsterdam. We spent a week in Germany and Switzerland before the cruise and several days in London after.
I actually met a woman once who lived on the ship we were on. Its like assisted living, You get your meals and can even have them delivered to your room. They clean the rooms, make the beds and will do your laundry. there are shows every night, and lots of entertainment during the day. What's not to like?