Getting through the day as a caregiver
 

As caregiver for my wife during her illness and treatment for AA and MDS, I know how much work it can take to help a patient while at the same time juggling everything else in life: work, family, and running a household.

In a crisis, we caregivers can summon our strength and rely on our stamina and adrenaline, but dealing with a bone marrow failure disease is more often a prolonged struggle. Nobody can keep up a pace that's beyond their capacity, no matter how dedicated they are. Of course we want to do the best we can to help the patient -- our spouse, parent, child, relative, friend -- but we will be less able to provide care if we let ourselves get run down or perpetually stressed out.

So what do we do? Each of us has our own way of dealing with the limitations of our time and energy, but I can tell you what has worked for me. I have found three ways to keep myself going:

1. Taking care of myself.

I knew that if I got sick it would be doubly hard to take care of my wife. So I made sure to eat right, take a break for myself now and then, and to get enough sleep each night, even when my wife was up or I had the urge to stay up late to get a few more chores done.

Sometimes I'd feel guilty for taking any time for myself, so I had to remind myself that it was the best for everyone if I took care of myself. I still catch a cold now and then, but I get them less often since I've made that conscious effort.

2. Letting others help.

Lots of people said "let me know if I can help" when they heard that my wife was ill. Some of them were just being polite, but others really were offering to help, even though neither they nor I knew how they might help. I didn't realize it at first, but when I had too much to do and couldn't keep up, that was the proper time to ask those people for help.

Sometimes my wife and I thought people we knew (relatives, friends, neighbors, coworkers) were avoiding us because they weren't interested in how we were doing, or because they were afraid of this "mysterious" disease. But I learned that many of them worried that they'd be "intruding" if they phoned, visited, or asked too many questions. Some said they didn't want to risk waking my wife or interfering with her recovery if they called at the wrong time, so they didn't call at all!

The solution was for me to pick up the phone and call them, either to chat or to ask them to do something specific for us: give one of the kids a ride somewhere, do an errand, etc. In hindsight, I realize that I should have done this more than I did. People were ready to help and they actually felt better once they could.

Professional assistance is often available to caregivers too. We found a helpful social worker at the hospital, for example. But I found that the people who lived near us were the best resources when I needed help getting through the day.

3. Letting go of less important things.

Before my wife got sick, we were like most families, dealing with life, work, family, and the routine problems we ran into, and following our interests and hobbies. But after my wife got sick, there just wasn't time for everything we were used to doing regularly.

We had to give up some of those activities, and the trick was to avoid worrying about it. So what if the magazines were piling up? We had to cut back on hobbies and volunteer work we both did, and skip events we would normally have gone to. I had to become more flexible and less fussy about following our usual weekly schedule of chores and activities. These things may seem important at the time, but in the scheme of things they really aren't, and we had to keep that in mind.

We learned a bigger lesson: that what's important in life is our time together, our health, our family and community, and how we help each other. We've retained that lesson even as my wife recovered. Now, when we run into the same day-to-day frustrations that everyone faces, we fret less over them and appreciate that we're together to deal with them.

These methods may not be the best ones for everyone; coping techniques differ from person to person. But if you are a caregiver, please don't forget that your well-being matters too, so it's important to find what works to help you manage your time and maintain your physical and mental health. You, the patient you care for, and your family will all benefit.

If you have your own methods for managing your time and sanity while caring for a loved one, please share them.

Great tips
 

thank you for these wonderful tips!!! please keep posting with any advice !!:)

I am the care receiver
 

I am the patient (recovering) and I always worried that my adult children were taking on too much and giving up so much for me. They are close and I knew they had their family and friends to vent with. I read about the fine line between hovering and helping-I hated to ask for help! I felt I had lost everything that was my life-and I had to be pushed in a wheelchair in the beginning. My daughter opened her home to me and she was my outspoken spokesperson and kept detailed journals when I couldn't. They saw my struggles, tears, exhaustion and I tried to stay out of her way. But then we all began to communicate better and I gained strength and was able to help her in the housekeeping and enjoying my granddaughter. Her and I had very different housekeeping styles-mine being a little too "excessive' and I learned to let it go! It just didn't matter if that dish didn't get washed or that sock returned to its drawer. That was the hardest lesson for me-let it go and accept the help that is offered w/love and thankfullness. I was not pitied-I wsa loved! I was not putting anyone out- they helped because they wanted to and I leaned to let them and enjoy the time we shared. My church provided meals and bottled water for months-my friends came to visit-you know even a 10 minute visit was tiring-but it was ok to stay in my sweats, it was ok to sit and just listen and enjoy their chatter-it kept me from becoming so isolated and then depressed. I was scared and now 3 yrs. later I feel I have come a very long way. I now live w/my son who is closer to my hospital and he and I are both "excessive" housekeepers. I go to knitting groups, quilt,and do yoga. I am creating a new me and I am so very thankful for the family and friends that supported me to this point. I try not to complain and really they know when it's a bad day. No regrets on their part they tell me and
I know beyond a doubt that if I get worse-all I need to do is call and I will be surrounded with love and help and hugs. (don't forget the hugs!) Barbara

To Barbara
 

Barbara,

Thank you for sharing your story. My dad was diagnosed on 01/13/07 and it has been such a scary experience. I try to keep my spirits up for my dad but it has been extremely hard. When I ask him how he's doing, he always gives me the same answer -- that he is fine. However, I don't really know how he is feeling other than the same answer he gives me. Your story helps me realize even more how important love and support is. Although I am so scared right now, I know I gotta remain strong and positive. Thank you.

Hi June- you know I keep saying I'm fine also. It gets to be a broken record and at times I'd see their eyes glaze over as I spoke of my counts and daily health. So it's so much easier to say "I'm fine" also.My son knows when I'm beat-I'm pale(er!) and all I can do is sit in my chair-there is just no energy for anything else. But I keep on keeping on as I'm sure your Dad does-do you keep track of his counts also-those will be a good indication of how he's feeling-bruises? Bleeding? How lucky your Dad is to have such a loving,concerned daughter-don't give up hope-you sound like you're doing a fantastic job-does he live with you? Living together makes it almost impossible to hide the bad days. You're both i my thoughtsd and prayers! Barbara

"Yes, but how are YOU?"
 

Whenever I saw friends while my wife was undergoing active treatment, they would immediately ask how my wife was doing. I knew which friends were just being polite (so I should say "fine") and which friends really wanted to hear the details about her condition.

I thought it was amusing that not a single person ever thought to ask me how I was. Obviously, I wasn't the focus, but it was funny just the same. I was often tempted to tease people by saying "Oh, and by the way, I'm fine too!" but I really didn't mind. After all, I agreed with them that my wife's condition was the one of primary importance.

I try to keep that lesson in mind when I'm talking to another caregiver, and avoid the natural instinct to ask only about the one who is sick. For example, when I talk to the parents of a patient, I know they'll appreciate being asked about their other children too. Everyone counts, even if only one is ill.

And there's another good reason to ask how the caregiver and other family members are doing. You're likely to hear some good news! Even when everyone is worried about the patient's condition, the chance to tell or hear other family news can provide a pleasant counterbalance and reduce everyone's anxiety.

My daughter was my caregiver
 

My daughter (my caregiver) had nightmares, sleeplessness and had a hard time balancing her schedule, raising her daughter w/her schedules and taking care of me as well as fielding calls and keeping everyone abreast of my condition. I was so thankful she had the support of family and friends-I knew she needed to talk things out and have her own down time. I tried to use my friends and family to drive me to appointments to take the burden off of her. My adult children were willing to relieve each other and took turns. Yes- I know my illness took its toll on her and I will be forever grateful for all she has done for me. Barbara

Neil-your suggestions were so useful I showed them to my kids and sister. They apprepciated hearing from a caregiver's perspective. Thanks! Barbara

Neil, everything you said was so true. I have gone through the stages of feeling guilty about taking time for myself, and receiving help from others. But it's true, I don't want to get sick myself while caring for my husband. Eating and sleeping right has really made a difference.

I have been really blessed though in that many people follow up the question of "how is Joe?" with "and how are YOU. YOU need to take care of yourself too." How fortunate to have so many people reminding me all the time.

I can also relate to knowing when people are really concerned and when they are not. Thus, some people get the generic, "Everything is fine" answer since that is what they want to hear, and others get the detailed answer - which truthfully isn't always fine.

In any case, thank you, and everyone else for your encouraging posts.

this is the first time i have read this thread! thanks neil for such good advice even though, my caregiving days are mostly over, thank goodness :)

just to pick up on a couple of points... i was very fortunate that many people asked how i was. even shane's doctors. i remember the time whilst receiving platelets, he went into shock and i pressed the emergency button. the entire staff came charging in and attended to shane. but the doc turned his head to me and asked "how's mum?" and later put his arm around me and told me how well i coped with it - bless him.

and when bumping into people, they would always say "if there's anything i can do" to which i never asked for anything in the early days at least. but as time went on, i started to ask politely if they wouldn't mind picking up my little one from nursery, or having my older one for dinner after school. i was surprised at how they jumped at the chance to help and i think they were happy to actually be involved in helping us all as a family. i remember getting a text message from one mum saying how thrilled she was that i had asked for her help. i had family to help, but decided to ease the burden on them by having the other two boys scattered around occasionally - the boys enjoyed it too.

so there you go! :D

gina xxx

My Mother, being the awesome lady that she was always worried about me. She never wanted to become a "burden" to me. Which was so far from the way I felt. It was tough at times juggling work, my kids and the daily ups and downs Mom and I went through throughout this disease. I have no regrets through it all. I would still be there by her side if she were still here with me. She was my best friend and an awesome Mom. My parents live with me. It is still so new and it is not easy at all for my Dad. They were married 57 years. His health is bad. To shorten this story.. I was adopted when I was 3 weeks old. There was a reason my parents and I were brought together. They loved me, Mom was with me always, she was there for the birth of my kids. I promised her that night in the hospital that I would always be by her side. I kept that promise. We were together until the end. The morning she passed away I heard her call for me. She had fallen again and God gave her the strength to holler out my name. I picked her up, I helped to the bathroom, sat her down in here chair in her room. We talked for about 20 minutes before she started into a coma we told each other we loved each other. She knew, I knew what was happening and that there wasn't anything to do to stop it this time. She had had bleeding in the brain before, but when she fell and hit her head by the time she said she was in pain the bleeding had evidently become so massive that it caused a mid-line shift. I talked to my Mom the entire time in the ER and never left her side. I knew she had finally gone into a complete coma but I wanted her to hear my voice and for her to know I was ok and I would take care of everyone. It was time for her to go home. And that is what she did. Throughout everything that day everyone from the ambulance crew to the ER to all her doctors. They were the reason we were fortunate to have my Mother for 21 months after being diagnosed. And for that I will always be greatful.
Being the caregiver can be stressful at times because you feel so helpless. But I would do it all over again. I miss my Mother so much. It has only been 2 months but she truly was a beautiful lady and stronger than I think I could ever be. I would always tell her as I grew up and had a family of my own, that when I "grew up" I wanted to be just like her. I am told that all the feelings that I am feeling are normal, but I would give anything to have her here to talk to. Although that is selfish of me and I do know she is in a better place without pain and not suffering. She is probably thinking come on Beth get yourself together we will see each other again and I am with you always. It is just so hard sometimes... Thank you for listening to my rambling. God bless everyone that has this disease and their families. It's tough, but they are so strong and brave and may not even realize it.

Caregivers
 

I am sorry you are going through this pain! I was a care giver for my mom. We would talk every evening on the telephone even though I saw her almost every day. There are times I think about calling her even though she has been gone for three years.
Now I have MDS and don't want to involve my daughter because I think it is too hard for her. Sometimes, she insists that she go along to see my doctor but the stress she shows affects me.
You are a wonderful caring daughter. Try to be proud of yourself even though you have this pain to bear.
Lollie

My mother has mds from radiation. She has blood transfusions evey two months. It is hard to see her so frail. She is great after she gets the transfusions. Sometimes I get so angry that she has this. Everyday I wonder if this is her last day. She is dealing with this better than I am. She is 77. I'm always looking on the internet about this illness.

Thanks for this Neil...I needed it to-day...

Thanks for the reminder to take care of ourselves and that it does help the patient in the long run.

I suffer from the "SuperMom" syndrome sometimes and force myself to take a break, in hindsight I realize it really is important. :o

To all Caregivers
 

As both as survivor (CLL then Chemo-Related MDS) and caregiver, and as a Stem Cell Transplantee, I want youto know that you are a hero to those of us that are afflicted.

It is a difficult road that we travel and sometimes we get distracted by the job that we have, getting over the day to day perils of living. In many ways, you feel the pain we live with more than we do. We are given drugs that ease our pain and often ease the memory of the "stick" or "poke". MY job is to get through each bit of this phase of this affliction, a little at a time. You not only see it, but re-live it in full detail, often at inconvenient times. We remember that it happened (hazily), you remember it and re-experience it (in full living color!) when you see us. We usually nod off while the drug is administered, you sit and watch and observe every little nuance and wonder if we are comfortable, what we are thinking, if there is anything possible that you can do to make it easier.

I have now got a lot of heroes in my life, and am always looking for ways to thank them and tell them that I love them for what they did and continue to do to help me.

THANK YOU!!!

Thanks
 

Thanks so much for this !
I'm the caregiver and can't stop crying because I can't imagine not being with my mother.

My father (parents are still together) has completely distanced himself from this, which I find so frustrating. :(

Perhaps your father is even more fearful than you are, and that's why he has trouble facing it.

That could be,
the way my mother interprets his actions is that he doesn't care at all though. :(

Thanks for the great suggestions, Neil. I knew to ask about the caregiver as my mom had cared for my father who died of colon cancer 7 years ago. So whenever I talked to her, I would always ask about her first.

But when my husband got diagnosed, I hit the ground running and started doing everything! I knew that I was going to get burned out but I continued. Sure enough I developed a respiratory infection. Just about the LAST thing that my husband needed at the time! Needless to say I isolated myself from him and cared at a distance. But I learned a very important lesson. You do have to take care of yourself or else you are no help to the patient.

I knew that in my head but not my heart. I am sure that we all go through that. Maybe your words can help someone avoid this.

Deb