Pat’s Place: Who Takes Care Of The Caregivers?
My wife, Pattie, is an excellent caregiver. A three-time cancer survivor herself, Pattie knows what it feels like to battle cancer. That experience helps her understand what I am going through.
We were recently forced to face the reality of my first relapse. After four years of Revlimid helping keep my multiple myeloma at bay, we learned two months ago that the myeloma is back and active.
Even if I’m not feeling well—or Pattie is tired after work—we always try to get out for an evening walk with our rescued dog, Finnegan.
We walk, talk, and get caught up on the news of the day.
Last week, about 30 minutes into our walk, I noticed she was unusually quiet. I had been talking about several fellow patients from our local support group. One had been complaining about the side effects of their treatment. The other had just entered hospice.
I was frustrated with the healthier patient’s reluctance to endure the side effects, which I felt were necessary to save her life. “Doesn’t she realize this is a fatal disease? Doesn’t she… “
Pattie stopped me, mid-sentence. She was clearly upset. “I’m one of those people!” Pattie said firmly. “It isn’t easy admitting the one you love may die.”
She continued quietly—but she was clearly upset. “Pat, you find comfort in helping your friends. You get help and support. But I don’t have anyone to lean on. Where is my support?”
I felt horrible as I realized how painful this process is for her. Pattie and I relocated to Florida less than two years ago. She has some family here. But they have their own problems, so Pattie isn’t able to talk with them or lean on them for support.
My wife won’t talk with anyone at the dialysis clinic where she works because she doesn’t feel it is professional or appropriate. And even if she had close friends to talk to there, it seems everyone is becoming more and more self-absorbed. They either aren’t equipped or interested in helping. Sound familiar?
Support groups are another great way to meet people to lean on, but Pattie is a very private person and doesn’t feel comfortable sharing her feelings with a large group of people.
My point? In a way, Pattie is too good a caregiver. She makes it look easy. She never complains and is always there for me. This makes it hard to spot when my wife needs support or a break.
Two weeks ago, I wrote a column about acceptance. I have accepted the finality of my multiple myeloma diagnosis. Obviously, my wife has not.
I will try and be more sensitive to that.
In the meantime, what can I do to help?
Pattie listens. She is there for me 24/7. But I’m afraid she doesn’t experience the peaceful satisfaction I get when I help other multiple myeloma patients. For me, helping others is enough—as long as I have Pattie to help me connect the dots.
How can Pattie find the help and support she needs? Who can provide her with emotional support?
Normally this is the point in my column where I would list a number of suggestions to help those reading.
Like how I will try and be more sensitive. Talking less about multiple myeloma—and dying in general—is a good place to start.
But I’m not sure I have the answers to this one.
This week I would like to ask for your help. What can I do to help my wife? Where can I help her find the solace and the support she needs?
Your suggestions would be greatly appreciated.
Feel good and keep smiling! Pat
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Dear Pattie, what a wonderful support you have been to your husband. my dad as MM and my mother is also a wonderful, amazing caregiver. I tend to be her wing girl, the person she can go to when she needs to unload. I think for caregivers there is a lot of expectations. An expectation to be strong, an expectation to always be patient and compassionate. Of course, that expectation usually is put on by the caregiver themselves. The caregiver is not given enough credit and rarely wants it. They believe the care, support, and attention should be placed on their loved one. I disagree though. The pain of this disease hits the caregiver and family members hard. It has shook my world. I went through depression initially and didn't feel I could even share what I was going through with my mom (the caregiver) or my dad (the one inflicted with this disease). You feel weak, guilty, and alone. I would joke and say words of hope and encouragement and then go home, through myself on my bed and weep uncontrollably.
The pain of this disease is equally distributed and no one should be forgotten. I think with care givers and family members we are expected to be strong for the one that is sick. But the fear of life without that person weighs heavily in our hearts and in our minds. To Pattie and all the other amazing caregivers, I see you. I see how you painsakingly organize the pills, go to doctor's appointments, make sure the right food is being served, listen to words of anger, fear, and wipe tears away. You are my heros.
Oh dear Pat. I feel your wife's pain. When I was going through this with Dave we had just relocated 3,000 miles away from all my support, family and two children in college. The fear and the worry I felt inside was not something I could talk about with my best-est friend, Dave. My other friends were as supportive as they could be over the phone, but you know, if they haven't dealt with cancer its not easy for them to know what to say or do. As I fumbled through my dark corners I never felt so alone and isolated in my life. Churning and churning all sorts of things in my mind. Being there, ever ready, for whatever Dave needed, and whatever HE needed to talk about. But never, ever, sharing with him, my fears and worries for him and for me.
One of THE BEST THINGS about going to a facility like Ark, was I suddenly had lots of patients and caregivers to talk to. We all learned from each other and supported one another. The caregiver's in MM are amazing and often patients talk to me because they don't want to burden their caregiver. The pick my brain and I pick theirs. It's an interesting dance.
I remember when I started my caregiving blog, another patient blogger promoted it and said, "I don't know about you, but I'm glad there is a caregiver blogging out there, because we patients tend to be 'me, me, me, my myeloma!" I laughed and laughed. He's right, but I understand it too.
Caregivers have their parallel journey with the one they love. It is similar, but different.
Give her a big hug for me.
Jeana and Lori-
I will pass along your advice and well wishes to Pattie. Thanks so much for taking the time to respond- Pat
Pat, You are fortunate to have such a devoted caregiver as Pattie, but I can only imagine how difficult this may be for her. The kind of support she needs is likely not available from friends, family, or co-workers. Since you mention that she is not inclined to attend support groups, I suggest that she seek out a private counselor, a professional who can offer objective listening where she can safely voice all her concerns--discover ways to better take care of herself as she is taking care of you. Your insurance company probably has a listing of local providers.
I am having my morning coffee with my beloved Joe and still checking in on the Beacon community. Sadly, it is his picture in front of me keeping me company as I lost him three weeks ago today. Reflecting on being the caregiver, my advice to you is to simply love Pattie. Show her and tell her every day how much you love her, how grateful you are that she is with you on this journey. Leave nothing unsaid between you. You can't hug someone too much. You never know about myeloma. It may sound simplistic but it mean't everything to me. I am so sad that my husband has passed, but I am so grateful that I was able to be there for him as he peacefully left this world and that no words were left unsaid between us. Caring for him, while emotionally and physically difficult, was a great honor and the most rewarding experience in my life. That is what is sustaining me now as I look ahead to adjusting to a life without my best friend. Take care.
Pat, I know exactly what your wife is feeling, thinking and going through. I am in her shoes - exactly. My husband's MM is becoming active again after a 3 1/2 year plateau after 2 SCT's. I have been at his side through every procedure and doctor visit. It is a very scary time. Knowing you will have to face the final days sooner than you think you can bear, and the potential of many years "alone", is sometimes more than a person can handle. I know God has a plan for me (and Pattie, too) and I try to remind myself of that when I get down. Please tell Pattie that journaling is a good way to release some of the pent up fears. I see a therapist occasionally - to vent. He knows I need that outlet and he is willing to listen (and accept the fee! HA!) Humor helps, too. You say "keep smiling"...I say "keep laughing".
Pat and Pattie,
Every other month, our local support group, which has been meeting monthly for around 15 years now, has a 1 1/2 hour "breakout session" in a separate meeting room for caregivers ONLY. These meetings are facilitated by a wonderfully sensitive and aware minister and one or two long-term caregivers. Patients do not participate in these caregiver sessions so I think (although as a patient, I'm not sure) it lets caregivers express frustrations, fears, and feelings and learn from (and support) each other.
Pat, Tears dripped down my face as I read your collum. You pretty much exactly described the relationship I have with my wife Ellen.Especially the part about you being further along with acceptance about dying than she is. I have gone significant periods of time focusing on trying to be a loving partner to her as a way of keeping things "simple" on a one day at a time basis. When I start thinking about the sadness that would await her should I die, things don't go as well. I spent 22 years in a twelve step program learning to take things one day at a time so I guess I have developed inclination not to try to get too far ahead than that. Came across a quote from Greek philosopher the other day concerning grief. It was that it was important to grieve over the passing of loved ones, but to be able to keep it in perspective. It instilled the hope in me that when the time comes my wife would surely grieve, but would also eventually have the strength to continue on. These comments were not intended to be the "answer" to the issues you raised, just a few thought your collum inspired. Joe
Thank you, Pat, Valerie and Monica! Great advice all the way around. I am going to start by speaking with social workers at the two clinics where I receive treatment. See if I can't find some one on one resources for her to tap. And Valerie (so sorry to hear about Joe...) I am going to give her a big, big hug as soon as she gets home- Pat
Dear Pat, Pattie and every other brave caregiver with MM partners across the Atlantic,
Being a caregiver, I know exactly what Pattie is going through.
My husband has had MM since 2005 and, ever since, our life has been a constant roller coaster ride, while we're holding on 'for dear life'. We talk a lot but a lot still remains unsaid. We both appear to be struggling with our own feelings. I also tend to keep things to myself because family and friends just don't seem to understand what we're going through. People always want to hear the good news, but it would be so nice to discuss the bad episodes, too. The idea of 'finality' sometimes makes me cry, but it is so good to know that I'm not the only one in the world.....
Kind regards,
Lia
Pat, I can relate and agree with everything posted so far. I look at everyone who posts on this site as my support group - it seems as though friends, family and co-workers go on with their every day normal lives while all of us going down this road face all the twists and turns that come with treatments, side effects, and the ever present cloud of possible relapse. So let's all hang together and be each other's support group - I can think of no finer group of people to be associated with. Be well my friend and give Pattie a hug from us! And if she ever wants to just talk I'll be glad to share my phone number. Kay
Phil-
Great idea about the support group break-out sessions! Pat
Joe, Lia and Kay-
Right back at you! I think of you all as part of my support group and family as well. There is a bond we all share, don't you think?
Thanks so much for being there for me and Pattie! Pat
Wow Pat, I never thought about this. I guess I am way too self absorbed. I've tried to improve in this area, certainly with friends and siblings, but not my husband. He keeps things inside and does not have the army of support that I do. Every ache, fatigue, side effect of not only my MM but my 2 knee replacements he hears about. I have no answer for Pattie but perhaps our awareness can help us, as you said, to be more sensitive. Thank you for writing on this topic. Linda
You are so welcome, Linda! Give that husband of yours a big hug next time you get a chance- Pat
We caregivers are not super heros, nurses, doctors, research analysis, nor made of nerves of steel, but somehow we, and others, think we either are or should be. Even if our beloved is still with us on this earth, we have lost our partner, the one we relied on, to lean on when times were tough. And if you are dealing with the dreaded steroids, you find yourself with a person you hardly know. We are in a constant state of fear and grief, no matter how we portray ourselves to the outside world, and the crying leaves us emotionally drained.
Even though my husband sits in the other room, I miss him dearly.
I was so impressed that you realized how much your wife needed help. Believe it or not, a lot of that help can come from you. I think there should be a caregiver's bill of rights.
1. You have the right to be afraid and angry.
2. You have the right to be acknowledged. Just as you take meds everyday to help with the pain, our painkiller is your love and appreciation for all we do. We need it as a painkiller, sometimes everyday.
3. You have the right to break down. And then to pick yourself up again on your time frame.
4. You have the right to ask for what you need. Whether it's a break, a hug, a kiss, or to talk about how this is effecting you and your relationship.
5. You have the right to seek outside help. You are not alone, even though sometimes the self isolation you put yourself into can at times feel comforting.
6. You have the right to ask for help from your love one that is suffering from MM. There are still things they can do, need to do, and feel better about doing them.
7. You have the right to cry, anytime, any place.
8. You have the right to have hope, fun, friends and family, and you have the right to share as much as you want with them.
9. You have the right to plan a life without your partner. You are going to have to come up with a game plan at some point in your life. We all plan for the future, and I have found reality is seldom on target with the plan. You still need to think about it. You do not need to discuss it with your partner, unless your partner is one who starts the process, and wants to be involved. The financial aspect of being alone, and coping is one of our greatest fears.
10. You have the right to time off, and do something just for you.
My life as a caregiver is a triple header. My husband has MM, my 85 year old mother has Alzheimer's, and my 58 year old brother is mentally handicapped. My mother and brother lived together an hour away from us in a house we bought for them so that my brother could work at a job we had found for him. The situation was getting bad. Two days after my husband came home from having his stem cell transplant, my brother fell and broke his femur in 7 places. That was a year ago. He spent months in the hospital, and I had to handle lawyers, corporate rules, union rules, state forms, and get him in to DDD. None of this was I intellectually capable, but still had to do. It also required my mother to live with us one week and my sister the next. We now have my brother in a group home, but the problems are still overwhelming and very demanding.
Mother gets worse everyday, but is not yet ready for a home. I try to find the humor in her actions, and call her my adorable 4 year old. She so wants to help, but it is the help of a 4 year old. We spend a great deal of time searching for lost and hidden items.
I am trying to juggle them all, work, and fix up the house we bought for them so we can sell it. My sister is of help, but has fear issues, and all this at times causes great stress on our relationship. My husband can help with very little of this, and this stress combined with the dex, is making him mean. He is driving away many of our friends.
I cannot change my circumstance. I am unwilling to run away..but I do in my mind. I know what I need is just for my husband to appreciate me and tell me so. I need to FEEL loved. I know I am, but I need to feel it. I need it like a painkiller. They say love can conquer all. I say no! Feeling loved can conquer all.
I can relate to how Pattie is feeling because I often feel that way. I am caregiver to my husband (age 39) and also mother to our 2 children (2 1/2 and 4 yrs old). My husband is newly out of treatment (6 months) and we are trying to figure out what exactly this "new normal" really means. With the addition of having two very young children, I feel like I spend all my time and energy taking care of everyone else but me. I am also currently a stay at home mom so I feel like I spend too much time alone with my thoughts which tend to get me going in a downward spiral. Some things that have helped me is getting together with girlfriends in a social type setting and talking about anything BUT MM. Doing simple things for me like getting my nails done, going shopping for something inexpensive that I wouldn't normally buy, indulging in my favorite take-out food (every once in a while), watching a chick-flick movie that I've been meaning to see, reading a really good book, going for a walk on my own. Basically taking time out for ME in whatever way is going to make me feel good. Maybe she would like a massage or getting her hair done, etc. Exercise is also a great stress reliever. Another thing I've found to be helpful is reading online blogs of other families going through this. It helps me to know we are not the only ones in this boat, since it usually feels this way. I also don't feel like a large support group would be helpful for me because I am on the quiet side (introverted). Maybe reaching out to others online would be an option for her (I've been thinking about this for myself). I feel like some "online" support from others in my shoes would be helpful for me. Hugs to Pattie...
I need to disagree with you, Sue. Caregivers are super heroes. Many of us wouldn't be here today if it wasn't for people like you.
Wonderful list of caregiver's bill of rights.
Thanks for sharing- Pat
Hi Virginia-
I can't seem to get Pattie working on this online. Great suggestion. I will keep trying... Thanks for the tips! Pat
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