Quality of Life
The article above reflects what is offered by Pauline Boss in her book Ambiguous Loss. I highly recommend the above Alzheimer’s Reading Room article as well as Ms. Boss’s book for any spouse who is taking care of their wife/husband at home or if your spouse is already living in a dementia care unit.
The author, Pauline Boss, explains it this way: when a loved one dies, we mourn the loss; we take comfort in the rituals that mark the passing, and we turn to those around us for support. That doesn’t happen when a loved one is still alive, but the losing occurs nonetheless. And this period of loss may go on for years prior to the spouse’s final departure through death.
One of the statements that Ms. Boss introduces is that “it is o.k. to love a shell.” Anyone who is married to someone with dementia knows that, in essence, a shell is what their spouse becomes with advanced dementia. But if the “surviving spouse” is able to draw on the memories of their marriage, they find themselves able to love their spouse regardless of the disease. Unfortunately, the memories remembered are no longer shared memories; joint reminiscing no longer occurs. Your wedding anniversary passes without any acknowledgement by your spouse, and although that’s just one of the burdens during this long period of loss, it’s a difficult one to bear.
Caregiving is a difficult, 24/7 task. I honor you on your journey, and I hope you find comfort and direction in the above resources, as well as the resources that the Alzheimer’s Association provides.
How do you define using your time in a meaningful way? If you’re getting ready for retirement – or are already retired – how are you going to spend those 40+ hours you previously filled at your job? “That’s easy!”, you say. “I’m gonna do whatever I want to do, whenever I want to do it: sleep in, read, play golf, travel; I’ll have no problem filling in the time!”
Now fast forward a year or two: you’re bored; your spouse is sick of you just hanging around the house; you’re feeling like there’s something more you could be doing; and even with doing whatever you’ve wanted to do, something’s missing. You wish there was more to this long sought after retirement phase of your life.
You’re not alone. The founding Director of the Stanford Center on Longevity, Laura L. Carstensen, correctly states in a recent AARP article, that “people are happiest when they feel embedded in something larger than themselves.” As we all know, we are living longer. In order to make good use of these added years, we need to ask ourselves what we can offer others in these bonus years of our lives. Should we continue in what might be our restricted scope of the past: getting by, doing what we can for ourselves and our family, but rarely reaching out beyond that confined scope? If you feel as I do, that’s not nearly satisfying enough.
What should our lives look like now that most people spend as many years as “old people” as they do rearing children?
How should societies function when more people are over 60 than under 15?
Ms. Carstensen is certain that today’s generations of older people will set the course for decades to come and that “change will happen, one person at a time.” I personally think that too often we think that any “doing” that we do must be grandiose in scale; or remarkable and newsworthy in order to be worthwhile. If I felt that way, I don’t think I’d even make an effort to give of my skills, my time and my passion to my community. Why bother? It won’t do any good, right? WRONG!
“If every person over 50 makes a single contribution, the world could be improved immeasurably.”
Think about it: us Baby Boomers have a history of life skills that can benefit so many! How sad it would be if the engineer, the lawyer, the CPA, the household family manager, the medical professional, and other highly skilled people put those skills on the shelf, never to be used again? What a waste! I’m not saying you continue to be that engineer, lawyer, and the like in your retirement. What I am saying, however, is that your past experience, regardless of its nature, can be used for the good of others but perhaps reshaped into a different form.
The bulk of my employment experience has been in the legal field and the senior housing industry, but at this stage of my life I’m not specifically involved in being a paralegal, or a senior housing manager. What I am doing, however, is combining those skills and directing them towards areas for which I am very compassionate, e.g. advocacy for older adults, and counsel for those taking care of a loved one with dementia. You too can contribute to your local community by applying your skills in ways that benefit others and are meaningful to you. I would be of no use to anyone if I didn’t believe my personal Baby Boomer motto: Committed to strengthening my community one person at a time – not one society at a time; not one State at a time, and certainly not the world. But I can motivate myself to strengthen my community one person at a time.
At what do you excel and what do you like to do? As an older adult, perhaps retired, you now have the luxury of doing what you LIKE and WANT to do, not just what brings home steady income and puts food on the table. Whoo hoo! What a luxury!!!
LET’S TALK ABOUT THIS SOME MORE:
What are you doing now to plan for a satisfactory remainder of your life?
How are others currently benefiting from your knowledge-base and how did you find the new venue in which to share your knowledge?
If you’re retired: How satisfied are you in this stage of your life? If you’re satisfied: why? If you’re not satisfied: why not?
Do you feel as though you don’t visit your loved one often enough at the long-term care (LTC) facility in which they live? Try to acknowledge that guilt is a feeling that may not necessarily reflect an accurate reality of how attentive you are towards your loved one.
The local caregiver.
Many people have expressed their concerns to me that they’re just not doing enough for their loved one who lives in a LTC facility. Even when a caregiver visits Mom several days a week, the caregiver still feels guilty for not making more of an effort to be there for her.
Guilt is a valid feeling – I believe all feelings are valid – but the feeling of guilt may not accurately reflect what is going on. Let’s face it, most of us are hard on ourselves. The old adage, “we’re our own worse critic” came about resultant from generations of people who unfairly beat themselves into the ground.
At a recent gathering I attended, a woman expressed how guilty she felt for not visiting her mother more often than she thought appropriate. Another person, also a caregiver, suggested that this person ask herself whether or not she felt she was doing the best she could in this situation. “If you are, then perhaps your feeling of guilt is based on emotion rather than reality.” Whether five visits a week or one visit a month – if that’s the best a person is able to do, then it’s sufficient.
Some of us caregivers simply need to cut ourselves some slack. Even when the loved one we’re visiting has no concept of the passage of time and is not able to discern whether they’ve been visited as recently as the last hour or as long ago as last year, we still berate ourselves for not being there more frequently.
Caveat: I need to add that even if your loved one doesn’t a) recognize you, and b) can’t quantify the passage of time, you are still a wonderful addition to that person’s life. No staff caregiver can take your place when it comes to providing a loving presence for your Mom who lives in a facility. Just being there with a smile, a hug, and speaking words of compassion can do wonders towards brightening Mom’s day.
The long-distance caregiver.
My biggest role as a caregiver was that which I performed long distance for my father who lived in a dementia unit in a Southern Oregon assisted living facility. I felt like I was doing something truly valuable for him while I was there but as soon as I boarded the plane for Seattle the guilt enveloped me. Usually, the first night of my return was spent crying because I felt I had been impatient with him, or I acted flustered when I had to answer a question that my father had already asked me no less than two dozen times prior. I relived every moment of my visit, criticizing this and that about what I did, or didn’t do. I was a wreck. I had to talk myself into believing that dad did have a good time and dad was genuinely happy to see me, and by golly, I didn’t do that bad of a job as a caregiver daughter.
I could then relax knowing that he was being well-cared for in my absence; my visits augmented that care, and I could rest on that fact rather than falling back on my guilt. The NY Times article, Being There and Far Away sheds some light on the long distance caregiver’s experience. I hope you’ll take the time to read the article as I believe it will touch on some topics that all caregivers may experience.
As I mentioned in my Blog entry, Deathbed Promises and How to Fulfill Them take a deep breath and shed the mantle of guilt you’re wearing. It doesn’t do you any good and it gets in the way of you being the best caregiver you can be. Cut yourself some slack and don’t be so hard on yourself.
Do your best – that’s all that is required.
My recent blog, “Caregiving: The Ultimate Team Sport” assumes the person providing care for a loved one has a wealth of family members upon which to draw for support. When that is not the case it can be difficult to find willing team members to provide that support. This article provides advice to the solo caregiver and to his/her friends, business associates, neighbors, and community contacts.
CAREGIVER: BE BOLD – ASK FOR WHAT YOU NEED.
Those people with whom you have contact probably know that you’re the only one carrying the ball when it comes to caregiving but they can’t possibly understand the degree of difficulty you’re experiencing. Assuming that to be the case, your friends, business associates, and neighbors may not feel the need to reach out to you with assistance. Now is the time to be very transparent with them and tell them what you need.
DINING ALONE IS A DRAG – NOW’S THE TIME TO ASK FOR WHAT YOU WANT.
There is no shame in inviting yourself to dinner. If these are true friends/acquaintances of yours, they will welcome you into their home. Once you’ve invited yourself a couple times, true friends and valuable neighbors will start to invite you into their dining room on an ongoing basis. Besides, they’ve probably been wondering what they could possibly do to help you out in your situation and you’ve just presented a very easy way in which they can do so. Heck – they’re going to cook dinner for themselves anyway; one or two extra people aren’t going to throw a huge wrench into their meal plans.
ATTENTION WELL-MEANING FRIENDS & NEIGHBORS!
I think the rule of thumb in these situations is to assume that your friend the solo caregiver needs a hand with something, so ask him what he needs. Let’s look at the difference between the following offers of assistance.
- “Hey Sam, call me if you ever need some help.”
- “Hey Sam, could you use a little extra help around the garden? I’m all caught up with my yard work and would like to help you in any way I can.”
- Hey Sam, we always cook for a crowd and always have some leftovers. I’d like to give you some leftovers in disposable containers that you can freeze and use any time you don’t feel like cooking for yourself.”
In the 1st example, you’re leaving it up to Sam to feel comfortable enough to inconvenience you (in his mind) with a request for help. You’re basically forcing him to ask for help. In the 2nd and 3rd examples, you’ve given Sam an offer of tangible, definable assistance that shows that you really mean it when you say you’re willing to help out. If neither of those offers fit within Sam’s current needs, you’re still making it easier for him to ask for help with something else: “Wow Larry, thanks so much for your offers but what I could really use is help figuring out the health insurance issues that have kept me awake at night. How about having a beer with me, and between the two of us, maybe we can make some sense of this mess in which I find myself.”
Friends, work associates and neighbors – your solo caregiver friend needs help and you could be just the right person with the skill that he needs. Some day you may find yourself in a similar situation and will know first hand how difficult it is to be a solo caregiver. If it takes a village to raise a child, it must take at least that to help someone with the burden of being a solo caregiver.