Pat's Place: Taking Care Of Your Caregiver
My wife, Pattie, is an amazing caregiver. Smart and compassionate, her own experiences as a cancer survivor prepared her to intuitively understand what I need and when.
Pattie also has had a lot of practice as a caregiver; she’s been watching over me for over seven years.
I was battling symptoms for years before my multiple myeloma was diagnosed in April of 2007. The good news was that an MRI finally revealed what a half dozen doctors couldn’t figure out. We finally knew why my hands would shake when I wrote, why my right shoulder and ribs were in so much pain and never seemed to heal, and why some days I couldn’t walk up a flight of stairs.
Pattie was there for me when I developed a pulmonary embolism the following summer, most likely due to my therapy. She helped me get past months of non-stop nausea following my stem cell transplant. She also helped me deal with the disappointment I felt when we learned the transplant hadn’t helped.
Pattie held my hand before and after reconstructive surgery to repair my left ear after doctors discovered that I’d developed a secondary cancer – melanoma – after five years of non-stop myeloma therapy. A year later, she helped me get up and get going when my right hip was replaced after the joint was ravaged beyond repair by years of taking dexamethasone (Decadron). Periodic radiation therapy and three relapses — Pattie has helped me through it all.
But our myeloma journey together has taken its toll on her. I’ve watched Pattie change over the years. She’s hardened and become unsettled and stressed — do much so, I believe it’s started negatively affecting her health. It doesn’t help that she’s working in a job she doesn’t like just so we can keep her medical insurance.
Cancer isn’t fair. It’s not fair to be diagnosed with multiple myeloma. It’s also not fair to be the one responsible for someone’s care for so long.
Pattie and I have a caring and open relationship; we’re best friends. Yet, over the past few years, I’ve been trying to insulate her from some of my myeloma-related news. Yet it isn’t easy, given all the things I do related to multiple myeloma. In addition, most of my friends are myeloma patients, caregivers, or people in related medical fields. There’s no escape!
That’s fine for me — it’s my choice and my cancer. But I believe if Pattie had her way, the only time we’d talk about multiple myeloma would be after I see my specialist or get important test results.
That’s my dilemma: striking a balance between being open and honest, while trying to protect her from being constantly reminded that I’m dying.
It isn’t easy. We talk about everything. When a friend dies, we talk about it. But I can tell it’s tearing her apart; every time a myeloma friend dies, it’s a vivid reminder that I could be next.
For so long, it was us against the world. Since we never had kids, Pattie and I never developed a lot of friendships in the conventional sense. Making matters worse, Pattie left friends and family in Wisconsin to move to Tampa with me so my damaged bones wouldn’t ache in the cold. For five years we lived and worked near her sister, nephews, and grandkids on Florida’s Gulf Coast. Even though everyone was busy with their own lives, Pattie felt like she had someone to help if things got tough.
Now we’ve moved across Florida, leaving her feeling exposed and without a support system.
It’s funny how you don’t think about things like this when making life decisions. I thought we had taken everything into account before our big move.
Caregivers need two different kinds of support: emotional and practical (such as help with day-to-day responsibilities). At this point, I wish that Pattie would have cultivated more friendships with support group members and others who are going through what she is.
But I get why she hasn’t. I get why so many patients and caregivers don’t join support groups. It reminds them that they – or someone they love – are sick.
I’m confident that we’ll get things worked out. Still, I can’t help thinking about others like us. I’m healthy enough to be her companion and help around the house. But what about those who aren’t so fortunate? What about those with a spouse or significant other who isn’t physically or emotionally able to help?
I welcome your comments and suggestions, both for Pattie and other caregivers who feel overextended and disconnected. Maybe together we can help caregivers feel like they aren’t alone.
Feel good and keep smiling!
Pat Killingsworth is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of all his columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
G'day Pat.
Reading your column reiterated to me how self absorbed I, we, us become due to our illness. Whilst our carers and those who care for us understand this selfishness. I can only assume that all carers need time out or respite from time to time. I, like most of us, make a point to tell those who help out how much I appreciate their help. I guess after a while they need something more.
I think sometimes it is easier to have the disease then to sit and watch on the sidelines almost helplessly as a loved one has their ups and downs.
Maybe all carers need some time away from us sick people to recharge the batteries. Like everyone needs a vacation from work, caring, whilst a labour of love, is still labour.
Vicki
Early in my diagnosis, I was told by a friend to be sensitive to my wife's needs, for the disease and treatment can be almost as hard and almost as stressful on the caregiver as it is on the patient. Just a few days ago, my wife commented that she hadn't slept well due to worry. I asked what she was worrying about, and she replied, you're my #1 worry.
What we myeloma patients face is bad, but our caregivers also suffer, and it's good to be reminded of that. And, like you, I wish I had some concrete solutions for her suffering and worry. Sadly, I don't.
Thank you for your column.
As the caregiver of a myeloma patient in her 30's, it is devastating. Especially as she is not responding as many who have posted here that they have been in remission for several years. We have been through diagnosis at 32, Velcade induction which had to be stopped because it gave her an irregular heartbeat, SCT, Revlimid maintenance, relapse, Kyprolis which did not work, now in hospital having 96 hours of DCEP, all which is leading towards an allo transplant. I do not sleep. The worry and fear is overwhelming. It affects every part of your life, not only the patient. More than anything I wish I could take this burden.
Hi Pat, Hope you are doing well. Great article! Very insightful. I am the caregiver for my husband - 7.5 years. It has been a roller coaster of emotions for sure. Like Pattie, I feel I have become hardened too. I hate to say it, but I think "hardened" makes one feel it will be easier to accept the impending death of someone they love. It probably doesn't in reality.
I fear my caregiving role is winding down. I fear the vast emptiness in all the "extra" hours in the day that I won't be taking care of someone. I fear the discomfort he will be in that I will have no control of. He has an atypical mycobacterium infection now. Disseminated - all through him. Just started antibiotics, which interact with some of his other meds, so those have to stop. So does his chemo. For a year or possibly longer. I doubt he will make it that long.
From a caregivers viewpoint, we just want you to live and feel good as long as possible no matter what it takes. We will do it. Regardless of the toll it takes on us. It isn't about us.
Dear Pat,
I was a caregiver for 7 years until the day my husband - still unexpectedly - died in June 2012. However, at the time, I never realised I was a one! Being with him, looking after him, in sickness and in health - till death did us part - is something I did automatically. Being a translator, I worked from home, so I was literally always there for him. I did not care much about support groups, because the stories of other patients and their partners made me feel a bit depressed. There was always someone worse off than us.
And yes, it hardened me, too. Partly because of the constant, tiring decisions that needed to be taken about clinical trials (Velcade), stem cell transplants (donors who withdrew), medicine combinations, chemotherapy etc. that did not offer any security because the MM did not allow him to have long-term remission periods. But also the constant worry and sleepless nights when he was in pain and I didn't want him to go through it alone.
I read a lot about MM and translated Dutch texts into English for patients and hospitals. As a result, I sometimes knew more about the MM process and upcoming medicine than him, which occasionally bothered me, because I did not always want to share this information because it made him restless, frightened about the future. So I was in fact protecting him.
After Russ passed away, I was tired, so exhausted, because what I had done - and all caregivers in fact do - is a superhuman act. But we do it; for our loved ones, for the memories we will carry in our hearts for the rest of our lives. Our life with our loved ones, for however long it lasts but always turns out to be too short. And, God, am I glad and do I feel privileged that I was always there for him and managed to make his life a bit happier. It does not make my loss easier, but does take away the sharp edges. I know sometimes help other caregivers by just listening to them and sharing information.
I would like to extend warm regards to Pattie, your brave caregiver, but also to you, Pat as the MM patient. Thank you for sharing your thoughts with us!
Lia
God Bless us all, caregivers and patients, in this fight...not easy on any of us! So happy there are others that understand...
I am the caregiver for my husband the past 11 years. We've had our ups and downs in regards to the disease. I am blessed that I have friends who constantly pray for me and David. He also has friends who are concerned about him and are always there when he is well enough to play golf. At this time, the MM is back and it's a scary time for us. I try to be positive and read your articles, Pat, which lift his spirits up. In a couple of weeks he will start on pomalidomide leading up to a second autologous stem cell transplant. He is still working (we need the insurance) and his company has been very understanding thru all the past treatments.
As a caregiver, I try not to think about his dying before a cure can be discovered. The stress and worry is sometimes overwhelming. Yes, I have changed thru the years. I'm more of a "pusher" for David. I refuse to let him give up! I rely so much on my faith and the prayers said for him. I apologize if I offend anyone about my belief in prayers, but they have help me thru the years. I will put you and Pattie in all our prayer lines as well as all the MM warriors battling this insidious disease!!
Thank you for sharing your thoughts, Pat. What a blessing you have Pattie!! God Bless!!
Great column and very thought provoking too, Pat! Like you do, I have a wonderful caregiver in my life, but neither did he ask for this journey. Sometimes I think that having outlets such as participating in online forums, writing, and being in support groups where I know people personally, helps to take the pressure off of my caregiver(s) too. And of course we are fortunate to be healthy enough to still have a nice life together. Namaste ... hope you and Pattie enjoy some fun times together too!
Interesting comment by Vicki, don't you think? Yes, in a world where most of us are already self absorbed, living with cancer intensifies that. But personally, I have found it worse on the other side. I rarely have others that know I have myeloma ask, "How are you?" and mean it. Heck, my in-laws never ask at all. An entire evening can go by and no questions asking if my new therapy are working are what the side effects are like. Others we know, too. It's all about them!
The raw emotion being expressed here touches me deeply. There are so many facets to it; so many points of view. After reading your comments I'm sitting here, stunned. You caregivers are all my heroes!
Thank you once again, Pat, for your insightful column and sharing.
I think that the caregiver has such burden of stress, just like those of us with mm. This stuff can take over our lives, and it's a fight to live a regular life. Time "away"- rest, in whatever form that takes, is important, I think, b/c of the intensity of this disease.
My husband told me (one day when I was feeling sad about having mm) that I'll always be looking over my shoulder, but he'd right there with me. That is love and that is everything. Our caregivers are so special.
A very perceptive article Pat, especially as your wife has had to battle with her own illness too as well as be your care giver. I have spent years being a 24/7 care giver to those with very high needs for care.
There are MM sufferers who are alone or find themselves alone after diagnosis and I wonder how these people cope both mentally and physically. I wonder if it is harder for them to fight.
There are people like me with advanced MM who are full time care givers to their elderly parents at the same time as trying to meet their own needs. There are close relatives who care not a jot even to ask how I am. Families are self centred too, as you note.
There are others who regularly keep in touch or ask how I am doing, one is an elderly relative in the last stages of lung cancer who offers help if I need it. Another is a long standing friend who takes the time to physically visit on the rare trips he makes to the country, also keeping in contact more frequently as a stated aim now I have MM.
But essentially I realise I am alone 'carrying myself and two others' not able to do anything for me. It is very very tiring and I do not rest much. But I was always very very active so nothing has changed, except work would be impossible if I needed to do this, thankfully I do not, unlike many with MM.
Those of us with MM need to care for ourselves too, in whatever way we can or need and we need to feel we have purpose beyond MM.
You've got that right, Sylvia!
Pat, you are bravely unselfish to share such personal struggles with all of us. Currently, I'm urging a college roomie to make sure he takes care of himself as he lives 24/7 In the hospital with his dear wife who's undergoing the arduous chemo for AML. Love will get you through.
And here's what I want to drill into YOUR head and everyone of OUR heads: we are NOT dying, damnit! New drugs, protocols, and our spirit will give us longer lives. Every human dies. It's how ALIVE we are now, in this moment, that matters. You are very much ALIVE through your writing, your knowledge you so graciously share with us, and your love for Pattie.
Hi Pat, the commitment and love you and Patti demonstrate in your life and work comes from the beautiful and successful loving relationship you have with each other. You both leave a well lighted path of the route you are navigating on this uncertain and ever changing voyage. You are each in tandem as a team, on deck until the storm subsides and sun and calm return!
I'm with Van, if we live like there is tomorrow and the next day and next, then when our day is done, we will sit and reflect with great exhaustion, but with greater understanding that as caregiver or patient, we gave it our absolute best. I can say with recent experience of loss that when life changes for one and is completed for the other, another light shines to show us what is next! Tenacity, endurance and love are visible and real, and help us chart the course to the next point. As we learn from you we are all transformed by hope!
Sail on with the changing winds and so will we!
Pat,
I could not have said it better than Kathym. Ditto! We are all living our lives heading toward the same conclusion. "Man knows not his own time." We just found out today that we lost a friend, very unexpectedly, from a heart attack. He was only 53! And not sick. So, as you say, "keep smiling," and keep living, AND pray for the cure!
My prayers are with you and Pattie.
Julia
Guess if my readers have anything to say about it, I'm going to be around for a while! Thanks, dear friends.
Dear Sir,
Hats off to you for the battle you are fighting and encouraging all in the myeloma fraternity while doing that. My father recently got diagnosed with myeloma on September 30, 2014. He is 52 years old. His chemo cycles are in course, the next one scheduled for November 18, which also happens to be my birthday. You have to be around for a long long time Sir, and have to live a beautiful life and have to keep encouraging us, other people in the myeloma fraternity. Why I am saying I am there in the fraternity because in cases like these, when your most loved ones are in such excruciating pain, both physical and emotional, it's almost like being your loved one, like being him and like suffering from this ailment yourself or maybe even worse than that.
Wish you health and happiness Sir! We love you.
Pat, you're fortunate to have Pattie. She is quite a partner. I've always felt like myeloma is tougher on the caregiver than on the patient. As patients, we have some control and we come to terms with the disease. For the caregiver, it seems like there is more stress, more questions, more unknowns.
Thanks for writing this and let Pattie know she's admired for all her sacrifices. Matt
Dear Pat,
One and a half year after my transplant, I was finally healthy enough to look close at my husband. He had aged a lot since we started our MM journey. I told him so. This was his answer: "You shouldn't be so amazed. It was like seeing you constantly giving birth for all those months". I was ashamed that I didn't notice earlier what an impact my suffering and struggling had on him.
By now my average of good hours per day is about four. By using these hours effectively I do what I can to make him feel special and appreciated. Making good meals, joining him on business trips, clean his office ... etcetera.
We love each other dearly and hope against odds to grow old together. I realize that caregivers and MM'ers suffer a like. I still think we have to stay open and perceptive towards each others needs. That is what love is: give and take with a tear and a smile.
I wish you and Pattie ongoing caring and loving closeness in this MM battle. Living compassionate helps me and my husband to have still a very worthwhile life.
I have been a carer for over four years until I lost my husband in August.
You have to accept you lose friends and relatives in a sense because you do live in a myeloma bubble, and people just do not know what to say, plus it reminds them of there own vulnerability. It's not a nice place to be.
I took a different view point than my husband. It was important to me that he had everything he wanted while he lived, I would have been so angry with him if he did things for my benefit. If there is ever a time to be selfish it must be when you have the knowledge that time is not on your side. I have no regrets that my life was put on hold.
The bubble for me has burst, and it's my time now to do all the things I want. I do not intend to live in my husband's shadow and carry on with the life we had. In some ways this is my time to be selfish, you just have to learn to take the first steps of the rest of your life, with the knowledge that you gave the love of your life everything you could give. I honestly think this is what my husband would have wanted and he gave me the strength to carry on because he fought so hard to live.
This is the insight of one carer.
Eve you are right to some degree.
I too have no regrets of caring for parents, I could not have done otherwise. What I did not know was all the while MM was growing in me and when things started to be a problem, I put my parents needs first. My general practitioner (before MM was even suspected) called my caring position 'unsustainable' but I sustained it for a further 2 years until formally diagnosed and the reality of starting treatment became an issue. I still am caregiver to a parent, although the other had to be put into nursing home (I visit daily).
I could not put my life on hold as you can see. So I have come to terms with this is my life and my only wish is that I now outlive both my parents and can continue to meet their needs as their advocate / attorney. This will not be easy, but I am determined; not to fight MM, as how that is managed will depend on the skills of those treating me (whose attitude, methods etc. can vary even though some are myeloma experts), and my genetic luck.
Do I wish I had a caregiver? Not really, I would welcome practical assistance more then I can care for myself better.
So many heartfelt stories of dedication from those of you caring for loved ones. I'm sure if our positions were reversed, I wouldn't give caring for Pattie a second thought. I have some experience with this. She underwent a pair of surgeries, six years apart, for cervical / uterine cancer and later ovarian. She also underwent heavy duty chemo (they gave you a lot more Taxol back then – and over six months not three – like they do now). It wasn't easy for me. I used to wonder: is it tougher to be a caregiver or patients? Its close, but I would say "patient!"
During my diagnosis and treatment, my husband (then boyfriend) took on a lot by himself. Driving to appointments, missing work, moving us in together, doing house chores, driving me around everywhere as I was too sick to take the subway. For sure it was hard on him.
Now fast forward 4.5 years. I was in remission a good while, and during this time I built my health back up, went back to work full time, we got married and a number of other milestone.
We also build up a circle of support that is now in place as we enter the next stage of myeloma. Relapse. (My numbers has been going up for 6 months and am officially relapsed myeloma, but still in watch and wait)
In the last few years we've become active members of a community church, we joined a cancer community for young adults with cancer which also welcomes caregivers for the programs and events (it is for all cancers, not just myeloma, since I'm probably the only one who developed myeloma at 30 in Canada!) (I am 36 now btw). My husband has met other "caregivers" through our group and has support that I cannot give him. Just being able to talk to other people going through it helps I think. I've also found other support organizations like Wellspring, and Gilda's Club in my city that run programs for survivors and those in treatment.
So my advice is to broaden your and Patti's circle a little bit. Reach out to programs or share your story with new friends, church, etc. and you will probably be surprised to find others who are going through something they can relate too.
Aloha Pat,
As usual you hit it out of the park with this article. Thanks for opening up another important discussion.
The stories here show how varied each patient's, and therefore each caregiver's, situation is. As I see it, we obviously have no choice about the disease, so it is important for all involved to make the most of what we have left.
Maybe it is actually a privilege to be so close to someone that you can be considered a caretaker? Is it not a privilege to have someone care enough for us to provide our care? I hate that I had to contract MM just to be able to see this. I know this sounds pretty airy-fairy, but I really feel it is important for us to find the positive here. Yes we have both (patient and caregiver) been given a huge burden; but the love that we experience from carrying this burden is a gift.
I truly wish you and your wife well. Please know that she is not alone.
Aloha
Tom
I love everything about your comment but the screen name you've selected, Lys2012! How do I tell you I think your comment / suggestion may be the best ever!
I agree, Tom! It's a blessing and a curse. The irony isn't lost on me ...
Hi Pat! I intervene only now, as I find concentrating on the myeloma issue often emotionally too tough. But I wanted to tell you that in my opinion, if you are well enough to go to movies, or theatre, or concerts or any other distracting and pleasurable activity, I think it would help both of you. Also, I would try to make friends with people who do not have big health problems. Cancer is so depressing. Finally, if Pattie could dedicate herself to an activity or a hobby, even better if it is a new one, that would take her thoughts off the daily reality. About one year ago I started taking drum lessons. It makes zero sense, at my age I will never play in a band and I don't know why I'm doing it. But I like it so much! I enjoy practising the exercizes too. This activity is part of my post diagnosis life, and proves that not everything about it is negative. As all new activities, it opens new synapsis paths in my brain, which is enriching. But on a more prosaic ground, even going out to a restaurant is a wonderful distraction. The thought of the disease and the relapse is so charged with worry that I find that distraction technique (and sometimes retail therapy,yeeah)is the key to retaining some serenity.
Great advise, Annamaria! Yes, too many of my friends have myeloma, too. Another down side to that; I've lost four of my best friends this year. Tough stuff...
Greetings to all who have posted and their readers. As Thanksgiving approaches, I as a family caregiver am trying to be grateful and thankful for the little things, like a wonderful cup of coffee in the morning, or something more consequential, like a positive interaction with a compassionate medical staff person for my husband, who has MM. Blessings to all those with MM and their caregivers at this time of year.
Michele and Norman
We miss you and wish you well. We wish you never left us. I've tried calling a couple of times but no answer. Richard and myself and Ann Martin are together this weekend in Orlando for a few days. I am sorry things are not going well for your wife, it is hard being a caregiver to say the least. Life is tough and obstacles are always challenging. Cancer is a nightmare like from he.. There are no easy solutions. But know we miss you a lot. Debra and Richard