Help for my Spouse

[Lorielle]

Ten years ago I was diagnosed with CHF and had a mitral valve replacement. Two years ago I got a pacemaker/defibrillator and had a cardiac arrest two weeks later (thankfully I had the device!).  Then a few months after that, I forgot to increase my coumadin and developed a blood clot on my artificial valve and came within hours of death.  But for the past year and a half, I have been doing better.  However, I still exhaust easier than average people and sleep much more than average.  My husband is about at the end of his rope.  He gets very frustrated with my inability to do things that require long term energy and stamina (like running around town for hours, cooking 3 meals a day, etc).  I'm pretty sure I'm a drag on his life, although i know he loves me and we try to do things together.  He has more interests than I do, now.  At 47, I'm kind of like an old lady who likes to sit or nap a lot.  Usually I can only manage to prepare one meal a day, so he or my kids have to take care of themselves but I try to do as much housework as I can.  When he is home, even though I sleep at awkward times, I try to devote several hours to him by playing board games, watching his shows with him, playing miniature golf or something, going to church, etc.  But I think he needs a support group.  I've checked locally and find nothing.  I wish the doctors would have educated him/us about the lifestyle change, what was to come and how to best cope. I've had to find out so much on my own.  But he really doesn't know how much of my behavior is for real and how much i am being lazy.  I love to be up and doing and accomplishing things, but when I know it is just going to wipe me out and I'll be worse off for it, I wait until I really have the energy.  I need someone to explain it to him and identify with him.   It seems like most of the "heart help" sites are directed at heart attack patients and spouses, which is different, because they often get better instead of worse.  My husband is a truck driver and is only home a few days a week, but I have two young teens that I have to spend time and energy on, who are also deprived of a full time mother.  So its not like I can just rest the whole time he's gone and then be perky when he gets home.  Please help with any comiserating or empathy that I can copy and past for him to read---or suggestions for me!  Thank you very much.    

[maggiemag]

I'm sorry to hear that he doesn't get it.  I think it is a common thing.  I especially hate it when someone tells  me that I look perfectly fine, when in fact that I am not.  Since he is home a few days a week, arrange your next cardiology appointment for a day when he can go with you.  Alert the cardiologist ahead of time so he can prepare a little talk.  Hopefully your husband is home at least one weekday!  Or maybe your group has a nurse practitioner that could give him a call and discuss stuff/expectations?  There is a website for heart failure patients that may have info you could print out for him: chfpatients dot com.  Also, do you exercise?   Even though you have limitations, a little exercise, gradually increasing with your doctor's permission, can really help.  One can have greater energy, generally feel stronger and better, and it wards off depression.  It does sound like you may have a touch of that too, which is understandable.  Lastly, (and this has been a book!) there is a theory called the *spoon theory*, about people with chronic illnesses.  I think if you google those 2 words, you may end up with a good link and can print it out for him to read.  Hope these suggestions help!

[FLBrat]

Very good response maggie.  Also, you may consider your diet.  You write that you are too wiped out to make meals.  Dont take the shortcuts of "meals in a box", they will sap you of all energy and offer little real nutrition. Not to mention fill you up with sodium.  Sometimes I cop out on effort in making the meal due to being tired.  I throw some chicken on foil, cut onions and squash (zucchini and yellow) on top, little spice and herb and fold it up into a "bag".  Put it in the oven (350F) and forget about it for about 40 min.  Join it with a quick salad.  Little energy expended but I am getting proper vitamins.  Most importantly, I throw out the foil and have one less pan to stand there and wash. Look for healthy shortcuts and take vitamins.  Good luck and be as patient with your husband as you want him to be with you.

[often]

You dont say what, if any, meds you are on. I know that once I had the bi-v/ICD implanted, I had a lot of improvement.  In  my case the bi-v straighted out my out of sink beats.  With that came an overall improvement in my heart.  It was at that point I needed to lower my BB in order to regain some energy.

While this might not be viable in your case, it is something to discuss with the doc.

The discussion on diet is very important.  

Best of all to you

[lulama]

What a lot of good advice..Bet there are other wives who need that advice also..........Brat, thanks for the cooking tip !  sounds delicious as well as easy.........I wish others would post cooking tips.......Lorielle,..read those posts carefully, and try to remember the last line of Brat's

[anacyde]

I think there might be some support for both of you at a website called A Mother's Heart.  Google for it.  The group is actually for mothers with peripartum (pregnancy-related) heart failure, but some of the women there also are just moms with idiopathic dilated cardiomyopathies.  I think you'd find comfort and support there.  Be patient if you can't access the site immediately, there have been some apparent server problems but this usually does not happen.

As for what's normal and what's not, even very mild cardiac dysfunction can exhaust a person.  With CHF in a younger person like yourself, it's probably difficult to look at you and think of you as ill.  Men are visual creatures ;)

When I was sick (I had a mild cardiomyopathy) I was exhausted.  I made bag meals as I think someone mentioned above.  I froze things, searched recipe sites for quick, nutritious and low-sodium meals and found quite a few.  I still use them now just for time-saving with two young children.

I hope this helps some.  Hang in there, and definitely check out the support group.  They'll welcome you warmly, I'm sure of it.

[Lorielle]

Thank you so much.  I think each post was helpful to me and very timely.  I appreciate them all.

[FLBrat]

A lot of us have been there Lorielle.  Seems like a long road, but recovery is possible. A lot of hospitals have a group that here is called Mended Hearts, or Mending Hearts.  Call the local hospital and ask for social services, they should have answers regarding support groups.