Myeloma In Paradise: How Much Caregiving Is Too Much?
At the end of October, I traveled to Tucson, Arizona to visit my ailing 76-year-old father. The trip had significant lessons for both patients and caregivers. Since I am both, it had a profound impact on me that I am still trying to organize in my mind.
Dad has both terminal cancer and very late-stage multiple sclerosis, a disease he has battled since he was 25 years old. Due to his cancer diagnosis in August of 2015, he was not expected to live beyond Christmas 2016. Due to his amazing durability and positive outlook on the world, we celebrated his second annual “last” Christmas in 2016.
My mother is his primary caregiver and has been helping and coping with his steady deterioration for over 50 years. For at least the last five years, she has had to do almost everything for him. To say that she understands what it means to be a caregiver is the Mount Everest of understatements. She has been there for my Dad from his young athletic outdoor days all the way to his current state of total dependency. He can no longer do almost anything on his own other than to speak and smile.
Mom has always been an emotional being. She is the type of person who experiences the highest of highs from the good things in life, but can also be brought to the lowest of lows without too much provocation. Sometimes it’s in the same day!
As I mentioned earlier, she has dealt with my father’s multiple sclerosis for over five decades. She has done whatever is necessary to keep our family going during my dad’s slow, steady physical decline. I’m not sure how much she has left in the emotional tank.
Mom used to be a pretty happy person. Throughout her life, she was outgoing and made friends easily. She always loved to entertain and would go to great lengths to be sure her guests were taken care of. I felt that she truly cared for most people.
Over the last few years, though, her attitude has changed. I think it is the strain of constant and increasingly difficult caregiving that has changed her.
Mom is rarely happy anymore. She is easily upset by the most trivial of things and these days usually seems to see the glass as half empty. Over the past couple of years, my family and my parents’ friends have told me they’ve noticed a big change, and sadly, many have stopped visiting.
Mom is creating a smaller and smaller world filled by little other than caregiving, bad television, and physical problems. I hate seeing my mom like this.
I have done everything in my power to help, but nobody can change unless they really want to.
I have tried to explain what I think is going on and how I think it can be resolved, but without any success. We even had a family intervention meeting last year with all of us confronting her about her behavior and offering up many solutions. While our point was made, changes weren’t.
My mother’s shift in attitude is obviously due to caregiver burnout.
The solution to a caregiver burning out is to lessen the caregiver’s responsibilities. The question that I don’t have the answer to is what to do when the caregiver won’t relinquish some of these responsibilities.
One of mom’s multiple reasons for not getting caregiving help is that they can’t afford it.
My parents are not wealthy, but they have scrimped and saved enough over their lives to own their own home and have a small nest egg in the bank. While in-home assistance isn’t cheap, I calculated that they could bring a care assistant for eight hours every day for the next two years and it would only lower my mother’s savings a small amount. In fact, the best conservative estimate is that she would only run out of money at the age of 103 instead of 123.
While it seems obvious to me that they could afford this care, trying to convince someone who has lived on next to nothing for 73 years to part with even a bit of their savings is a tough sell.
In reality, most of us will never reach our imagined retirement dreams, whatever those dreams may be. In many cases, as in my parents’, poor health will eventually keep us at home. So why not make the most of a bad situation? We worked hard for this money so let’s spend it while we are still alive.
In my parents’ case, spending money on home health aides or assistance beginning a couple years ago may have allowed my mom to not become so overwhelmed. I think that she would have kept her original positive attitude and may have been leading a happier life today.
While money can’t buy us happiness, maybe in the case of an overwhelmed caregiver it can help to stave off some unhappiness.
Of course there are those that simply choose happiness no matter what – like my father.
Dad has seen his physical abilities slip away from him most of his life. As of today, he is unable to go to the bathroom on his own, get out of bed without a mechanical lift (or a son with a strong back), feed himself, wash himself, or remember what happened yesterday or will happen tomorrow. He has skin cancer, lymphatic cancer, and multiple sclerosis. He was supposed to die over a year ago.
What he does do is wake up, smile, and ask how you are when you enter the room!
Some folks who have everything from health to wealth wake up and see another difficult day. My father, who has nothing, wakes up and is happy just to see you smile.
May we all be so blessed.
Aloha and all the best for 2017!
Tom Shell is a multiple myeloma patient and columnist here at The Myeloma Beacon. His column is published once a month. You can view a list of his columns here.
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Aloha Tom, I am sorry to hear of the problems that your elderly parents are facing. Would it be possible for someone in the health care system, such as a social worker, to look for 'long-term care' for your father and then possibly get your mother into accommodation too, if she wanted to have that? That way, if something happened to her, as the caregiver, there would be at least a backup of care. This situation happens here too of course. Over the last month, my family was helping my Dad, who is quite well at age 90, to find long-term care for my step-mom, who recently suffered a debilitating stroke and was hospitalized for over a month. She is no longer able to live at home, but she has been able to move into a care facility close to where my father lives. He still spends almost all day with her, and helps her as a caregiver in her new situation. Best wishes to you and your family.
Aloha Nancy,
Thanks for the ideas. Unfortunately it would take dynamite to get my Mom to leave her home. Hopefully it won't take a stroke or a bad fall to require it.
I don't have a problem with this. They are committed to aging and dying at home and I respect and understand it. What seems obvious you can't do is provide 24/7 care without outside assistance. At some point either the needs of the patient or the caregiver will go unmet.
For now, I give my Mom all the credit in the world for her commitment to my Father. It is truly inspiring. Unfortunately, it is also truly unsustainable and I would love for her to realize that before she is permanently injured by it.
Thank you for caring.
Aloha
Tom
Tom,
Another thought is to enlist the help of your father's, or mother's, medical team to make the recommendation of a health care worker in the home. Often our parents won't listen to suggestions from their children when they will from the healthcare person. We are their children and always will be. The healthcare person is a professional and has more authority.
Just a suggestion. I ran into a similar problem with my mother when it came to daughter vs. professional. And, in my case, I was both. She listened to an outsider with the same advice that I had given to her, but not to me.
Nancy in Phila
Aloha Tom,
I'm in full agreement with Nancy Stewart. Parents won't listen to us as their children, but a health care professional might be the best thing. Not saying that your mother will listen, but there's a good chance she will.
Wow Tom - a very tough situation. I agree with the others who recommend getting a health care professional to make the recommendation to your mother for outside assistance for your father. Your mother sounds like a remarkable women who has dedicated her life to taking care of your father at the expense of her own well-being. How often does she go to the doctor for herself? I hope annually. Perhaps her own doctor can make the recommendation for outside help.
As a caregiver for my husband, I understand the dedication, but I also experience the downside when he is having a bad day. I understand the feeling of isolation, and I have to force myself to stay engaged with family and friends even when the desire is not there. Unless you have gone through the caregiving experience yourself, most people do not understand.
Getting over her frugality might even be tougher. My parents are 86 and 90 and they are still saving their pennies! Perhaps you can get someone to come in just once or twice a week initially.
You certainly have a very challenging situation and I hope you can convince your mother that she needs to take as good care of herself as she does your father.
Really admirable parents, Tom. And very difficult situation for you who is also facing your own health problems without having peace of mind. His testimony makes me reflect on my own life as a wife and caregiver of my husband (73), prostate cancer survivor (2006), who suffers from Parkinson's (2014) and was diagnosed with standard-risk multiple myeloma (2015), after six months of illness and multiple fractures of the spine. These last two years have been very difficult. His suffering and my own physical and emotional deterioration are visible and worrying. I live one day at a time, but that state of uncertainty leaves me not knowing what comes next. I understand your mother. She battles her own battle inside.
Dear Tom, Thank you for sharing your family experience with the myeloma community. You and your siblings have tried many strategies to no avail. That powerlessness over "people, places, and things" (AA saying) is personally the most difficult for me. You love both of your parents and that is apparent. Two years ago, the family tried an intervention, perhaps another one is due, this time with a health care representative.
Once again, I respect that you and your family is doing as much as possible. I agree with the last comment. "She battles her own battle inside" Who does she listen to?
On a personal side, you encouraged me to support my caregiver more.
Aloha Irma,
You are a saint every bit as much as my mother! You are very right about my Mom battling her own internal battle. I have been married for 32 years and I would do everything in my power to take care of my wife. I get it.
What I want you and my Mom to understand, though, is that your husband will suffer if you don't take care of yourself. Taking care of yourself is both physical and emotional. In my Mom's case, all we are asking is that she allow outsiders to help her. While this will reduce her privacy and control with my father, it will give her a chance to breathe.
You have my understanding and heartfelt concern for your situation.
Aloha Maureen,
Thank you for your ideas and understanding.
Since I wrote my column, I did organize another "meeting" with a wonderful hospice professional social worker and my Mom. This was actually the latest of many meetings where we included health care professionals.
I think this last one though may have actually gotten through a little bit. At least we were able to have Mom seem to understand our concerns. That said, nothing has changed much and Mom continues to insist on doing almost everything herself.
This is a dilemma that many of us will face. There is no right way to watch our spouse die. All we can ask is the strength to do our best and the understanding that we aren't going to stop it.
Please take care of yourself also, Maureen!
Aloha, Tom
Hi Tom, It sounds to me as though your mother is depressed. From experience I know it can turn one inward, so that joy in friends is no longer found, and little interest or enthusiasm can be evoked. Have you or a sibling gone with your mother to see her PC and discussed depression? Medications helped my mother-in-law a great deal at the age of 75. Perhaps treatment could lead to an understanding of taking care of herself, and sharing care. You sound like a great son. Best of luck to you.