Pat’s Place: Tips For Patients And Caregivers
After writing with a broad brush about caregivers from a patient’s perspective last month, I promised to “think back and dig deep to remember how I felt and coped when I wore a caregiver’s hat” while I watched over and tried to help my lovely wife, Pattie, while she battled her cancer.
Being cared-for by my wife – and having taken care of her while she battled three different cancers for over six years – I have a somewhat unique perspective on caregiving.
I also interact with other patients and caregivers on a regular basis.
So, I’m going to stick my neck out and suggest a few things that might enhance the delicate balance between patient and caregiver.
So much of this is about perspective. The proverbial “walk a mile in my shoes” sort of thing.
I can attest that living with cancer is so difficult for both the patient and the caregiver.
Patients tend to feel guilty about needing so much help. And their lack of independence can leave them feeling defensive and vulnerable.
Similarly, caregivers often feel under appreciated and sometimes taken advantage of.
So what can we all – both patients and caregivers – do to help this vitally important and complex “dance” flow smoothly?
1) The thing most important for maintaining a healthy patient-caregiver relationship is communication. Both patients and caregivers need to let the other know what they need and how they are feeling. You’ll notice that the next few tips are also on this topic.
2) Think before you speak! Patients, in particular, need to keep in mind that your caregiver is also likely dealing with their own emotional and physical challenges
3) Ask for help when you really need it. But remember patients: Caregiver’s aren’t gophers or wait staff! Besides, it feels good to retain some of your independence, and it’s good to get up and get some exercise.
4) Conversely, the complaint I most often hear from caregivers is that patients are reluctant to ask for help. Not with the little things (see tip #3), but with larger, often emotional, issues that can hinder and complicate the patient-caregiver relationship. So...
5) Share your feelings! Let each other know when something is wrong, or is weighing on your mind. You will both feel better after talking about it.
6) Don’t be afraid to take a break or spend some time apart. Whether it’s spending some time alone or with your own respective family or friends, this is a must! You both need time to take your mind off of multiple myeloma and your patient-caregiver roles. Caregivers also need periodic breaks from their role, which can sometimes be very demanding or stressful.
7) Both sides should read one or more caregiver blogs regularly. Sure, reading patient blogs is important, too. But caregivers face a unique set of challenges, and both of you need to understand them.
8) Similarly, caregivers should try joining a caregiver chat room or forum. Attending a caregiver's support group in person would be even better! But such groups are often hard to find. Or lobby your local support group to dedicate more time and promote activities aimed at caregivers.
9) Stay organized. It doesn’t really matter whether the patient does this or the caregiver, whichever works best for the two of you, as long as you have a system for keeping a dedicated planner or calendar listing appointments, medication schedules, and the like.
10) Caregivers, familiarize yourself with the patient's health insurance. And don't stop there. Make sure that you both have access to financial accounts, and if there is any, understand how the patient’s life insurance works.
11) Get both medical and legal power of attorney documents signed, along with medical directives. And don't forget to update both of your wills!
12) I often write about how important it is to build a medical team. But how about organizing a caregiver's support team? Family, friends, social workers, anyone who can help both of you make it through the day. By the way, don't hesitate to accept help from friends and family when they offer. I have already said that patients should ask for help when they need it, but caregivers should too. Just make sure you spread the tasks around, so you don't burn-out members of your "team."
13) Last but now least, try and do some things together that aren’t all about being sick. Don’t forget to have some fun!
I'm sure some of you can easily add to my list. Please do! As always, your comments are appreciated – and can really help other patients and caregivers a lot!
Feel good and keep smiling!
Pat Killingsworth is a multiple myeloma patient and columnist at The Myeloma Beacon.
If you are interested in writing a regular column to be published at The Myeloma Beacon, please contact the Beacon team at .
Thanks for the wonderful, insightful column, Pat. You and your wife are a very wise couple! As a patient one has to realize that one's caregiver, if we are fortunate enough to have one, is under a great deal of stress also. So it is important for both patient and caregiver(s) to find time to relax and rejuvenate!
Multiple myeloma: the biggest roller coaster without a seat belt or safety harness . Never have I experienced such highs and lows. When my husband was first diagnosed and had to start treatment, we decided after every treatment we would stay in town and have a dinner date. Of course MM was a big topic of conversation, but there was more. Candle light diners, and holding hands. I remember years ago when we had to have colonoscopies, we scheduled them together. When it came time to drink the dreaded drink, I chilled the "stuff", chilled our best wine glasses, lit candles outside,and we sat overlooking our lighted pool with lighting bugs fluttering around us. Our feeling was, if you are going to have to do it, do it in the best way you can.
Thanks,Nancy! What do you think of Sue's suggestion? Pretty awesome and romantic, I'd say!
I think Sue's suggestions are terrific!
As they say, when life gives you lemons, make lemonade! Appreciation of each other, gratitude, and a shared relaxation technique (be it meditation, yoga or prayer) goes a long way toward " in-to-me-see". My wife, my children and I have been closer than ever in the past year, since my MM journey started. That is a blessing beyond words. Every day is a present: being present and letting life unfold as it will. It almost makes the diagnosis worth it! But the lesson is that we do not choose our challenges, but we choose our responses. May all be healthy and strong, happy and peaceful, and live in ease. May kindness and love guide all our actions.
What Jan says is SO TRUE! I feel that way most of the time. But note the "almost worth it" statement buried toward the end of the paragraph. Here's the thing. It is easier to feel this way when one recovers following diagnosis. Most patients can return to an almost normal life. But I found my relapse was a cold slap-in-the-face! We all think that we are going to be the patient that lives 15 or 20 years. And maybe we will! But so many don't. And relapse seems to put all of that into perspective--at least it did for me. Like I tell anyone who will listen, I'm guessing/hoping that someone will have to pry my laptop out of my cold dead hands in the end. The proof of staying thankful and positive will be in those last few posts I write before I die. I expect that they will be meaningful and profound. That they will still reflect the positive caring that Dr. Jan shared with us all today. I hope so...
Hi again Pat! Like you, I have been granted a remission (reprieve) in which to gather my thoughts and strength. I hope that your health gets better and you have many years ahead of you! If I have to leave this earth earlier than I would have liked, I too hope I can do it with my head held high!! Best wishes to you and Pattie...you are in our thoughts and prayers. Dilip and I have gained a lot of encouragement and knowledge from the Beacon experience, and your columns are always great!
Dear Pat,
It was good to read your caregiver's column. It's true, caregivers also need to look after themselves and occassionaly do nice things to be able to cope with the situation and support their sick partners. However, over the past few months, every time I did something nice I had guilt feelings, despite the fact that my husband encouraged me to go out and do something nice without him. On 15 June Russell passed away, losing his 7-year fight against MM. Within 5 days our world was shattered and suddenly it was all over. The nice things that I did to be able to stand by my man are now completely forgotten. I have been told not to feel guilty, but simply can't get away from the feeling 'if only I had known, I would have spent more time with him', despite the fact that we were around each other 24/7.
Lia
Dear Pat
Like always your columns go deeply into my daily thoughts and feelings . My first concern , when the prof' told that i have the MM , was "What is going to happen to my wife and childrens" . They are all , my wonderful caregivers . We were married when my wife was only 17.5 years old , we are together for 37 years . It is now two years that my wife shared my MM with me . Every second i can't forget her needs and difficulties . I try my best to make it easy on her . I totally agree with your suggestions and i am doing it practically . But i hate my endless MM and the inevitable relaps . I know that i will not live for many years and on the other hand i am not able to give my wife what she is deserves . I promise myself to do more . Wish you all the best.
So sorry to hear that Russell passed-away, Lia. How wonderful that you were there to help care for him.
Nancy, thanks for the kind words! And Itzhak, I felt the same way. Patients worry about caregivers and caregivers worry about patients. A difficult dance, to be sure!
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