ostrich for a husband…help

[Gayle D]

I need some guidance from anyone! My husband’s counts remain very low… HGB 8’s and down;WBC .5 We go to MD Anderson… Grover tried a trial for Scio-469 but he did not respond to that. BM remains unchanged since initial DX., so they say he has not had any progression in the MDS/RARS. He’s at about every 2 wks for transfusions. This next Wed. we will see what is recommended to him, once again. Grover has diabetes also and he’s NEVER been one to manage his diseases .. he’s always left it up to me to do research, make appts., guide him as to foods or meds, etc. However, it is beginning to take it’s toll on me. Grover does not seem to grasp the severity of aspects of this disease! IE.. one should/should not do certain things as expose themselves to encounters with bacteria/illnesses etc when the WBC is so low (getting one’s teeth cleaned) and then he gets upset with me when I intervene in cancelling an appt. etc. Grover still works in a management position but seems reluctant to take the proper care in preventing exposure to germs. I want him to realize that this IS a mean disease but one can MANAGE it and have a relatively “normal” life. Is “tough love” called for? Sorry to vent so but I know that some of you may have “been here”.

[Engel]

Gayle,
I can feel with you, my husband dx jan.06, with MDS/RARS it quickly turned to AML and he had chemo, went into complete remission for the AML, and is on consolidated chemo Vidaza, after 2 rounds it stopped. Now has infections and is on several antibiotics, low platelets, does not want to eat is 69 years old and wants me to do it all. I have so far but as you say it is hard and I just wish my husband would realize this. Take care,Gloria

[patti]

Gayle,

I’m not sure I have much advice for you. Except that this is pretty normal for the caregiver to feel. I have been caring for my MIL for just over two years. Although she takes very very good care of herself and keeps a rigerous schedule of juicing, supplementing and eating, I do all of the research, all of the doctor appts., driving, scheduling, on and on and on. On top of that we have a full time home business that I help my husband with, we homeschool our three small kids (all under 8), trying to take care of my house and keep my own health from falling apart from taking care of hers. Oh, I can relate. And I don’t have an answer for you. Except it’s the grace of God that I go. I do everything I can to take care of myself physically (which is not easy with everyone else demanding attention), get some exercise (early AM’s), pray a lot!, and talk to my husband. Do you have a friend you can count on to just vent to? This group is fine for that also, but sometimes it’s a voice we need to hear on the other end.

As far as infections are concerned – if your husband is prone to infections then watching what he does and where he goes is important. But if he seems to do well keeping them away then it might be something you just need to let go and let him deal with. There comes a point where you are one person and can only do so much.

For us, we’ve found mom is so resistant to getting any infections that it hasn’t seemed to matter when she has ANC’s of 100 or 500. She still doesn’t get infections. At least up to this point. The only thing we’re really careful of is if my kids get sick. That’s about it.

As for getting his teeth cleaned I’ll tell you what mom’s naturopath said and our research has bore out. The mouth is a breeding ground for germs. On the one hand if you don’t take care of it you can cause infection and on the other hand if you do take care of it you can stir things up and cause infection. So here’s what we did. We talked very frankly to mom’s dentist about what she has and the risks and concerns for infection because of her MDS. He and his hygentist BOTH worked on mom very gently and they did a very good job trying not to stir things up but gently clean her teeth so the risk of her mouth causing problems would be minimized. It works beautifully and she has no trouble getting her teeth cleaned regularly. This has changed recently only because she does not have enough platelets to withstand a cleaning but otherwise, she’d still be going every six months. So I would encourage you to talk to the dentist very frankly and see how supportive he is of really being careful and taking his time.

As for managing his diabetes I would encourage you to buy the book, “The Diabetes Solution” by Dr. Richard Bernstein. I got mine from Amazon.com for $11 (that included shipping). If you follow this book (which I find very easy) you will not have to worry about “managing” his diabetes. I “assume” you’re making his meals so as long as you cook the way this guy says your hubby will at least eat right three times a day. If he doesn’t when he’s away from you it will at least be less damaging. I will tell you this book flies in the face of EVERYTHING the American Medical Assn. says but I have found it to be 100% on the money as I’ve followed it. The main basis is that the AMA says anything below 120 one hour after a meal is acceptable. This guy is a type I diabetic and treats type II diabetes and says no way. A person’s blood sugar should NEVER be above 100 and really between 80-90. I keep mine right at 96 about 90% of the time. But you have to know how and why so definately read the book and you’ll have a much easier time managing “his” diabetes.

I can’t be much help for lightening your load but hopefully some of these suggestions will help. All I can say is I sympathize and I’m sorry. Hang in there. And whine all you like.

Take care.

Patti

[eve]

hi gayle

your husband might need to premedicate with antibiotics before having his teeth cleaned to prevent infection – being a caregiver is an endless task filled with many ups, downs and frustrations – make sure to take some time for yourself to regroup – otherwise you will be of no help to anyone

i have been there –

good luck
eve

[willie]

Gayle Not to make light of your situation but it is really like going to a carnival and trying your hand at knocking down the rodent that pops up only to find that a similar one has popped up somelwhere else. It is very difficult to help someone who is not too interested themself or is too nauseated to want to try. You have no choice but to keep trying for them. Willie

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