I need a weekly respite from being a constant caregiver? - AgingCare.com

I need a weekly respite from being a constant caregiver?

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My husband has had chemo and radiation for tongue and throat cancer. Was pronounced clear in Sept. 2015, however, he has forgotten how to swallow so has to be fed, medicated and watered through a tube and is on a very strict schedule to get all done. I cannot afford a nurse to administer this kind of care to him. He has a decent pension of which will cease once he dies. He also receives Social Security. I am wiped out....we are both 77. Closest relative lives1 1/2 hours away. No help nearby. Any suggestions?

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Wendi, the first thing I'd do is to train your husband to do his own feeding. That might motivate him to get swallowing and doing what the doctor ordered. If he could do half of his own feedings, that would free you up to have longer periods of respite. I'd ask his doctor if that is do-able, then if he says yes, DO IT!

If you search for "tube feeding" on Youtube, you'll find good videos that show you how to do it and all of those folks are feeding themselves. You could get him set up with the materials, but let him administer it to himself. Would that work to get you more time to yourself? He's not going to want to do it, because he prefers to have you wait on him. But if it means the difference between "eating" or not, maybe he'll learn how to do it, if he doesn't have any cognitive decline.
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I understand what you are going through. My mother in law had MG about 12 years ago and came to stay with us then when her nursing home days ran out. She couldn't swallow and had a feeding tube. Feeding her was an all day effort and exhausting. I remember having to set alarms to get up at night to feed her.

Is your husband a veteran? I understand that the VA covers respite care. Nursing homes have the ability to take people for a week long respite stay. It might be pricey but you could call a few in your area and see how it works.

I also wanted to mention that a speech therapist finally got my mother in law swallowing by using a technique called DPNS. He would stimulate places on the back of her throat with a frozen lemon flavored swab. Only took a few sessions for her to start swallowing again. You might want to ask his therapist about that.
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BTW, I believe that YogaGirl is also dealing with a parent on tube feeding.
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Wendi, thanks for the update as well as the explanations and insight into the situation.

I think you're experiencing what others have when a spouse or parent becomes comfortable with someone taking care of him/her and segues into or decides not to participate with his/her own healing.

Unfortunately, sometimes it takes a strong stand and refusal to continue with the level of caring, especially if a relaxing heart to heart talk doesn't motivate the person to be more involved in his/her own care.

You might think about what you're doing for him that he can do for himself, gradually, one task at a time, start declining to do it and allow him to realize that you're not going to continue exhausting yourself when he's not cooperating, especially since it seems as though he's passing up some opportunities to do so.

The challenge can be if Fred just refuses to do what needs to be done, so start with something that's not medical, something he can easily participate in and handle himself.

You may eventually have to take a firm stand and tell him that he's going to have to help because you're burning out and can't do it anymore. Sometimes you have to be a bit more aggressive and ask him what he plans to do if you become ill.

And if you do get sick, you will have to take time for yourself and he'll have to step up to the plate and become more involved.

This isn't an easy path; expect and plan for his resistance if not refusal. It wouldn't even hurt to feign an illness and spend the day in bed, forcing him to recognize that you're not Superwoman.

You're not alone; I'm sure others will post and share their experiences on taking stands against being the sole caregiver while the cared for person sits back and enjoys it.
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I think I have done most of what you suggest. I stated a weekly respite because I have managed to make a 3 hours window each day to run errands and be by myself......I need a longer time.......I really just relax when it begins again.....I have been doing this since July 2015. Like most, I never ever thought about this being my life.....So many things need to be done with our house.....we actually should sell it and move into something requiring less care, but now that's out. Fred's family is fractured so only one person there comes to help out some times. He's an older child with some of his own physical problems. I do appreciate your answers....all of them and I don't want you to think I'm not responding to them. I'm tired and I've become quite bitter. It seems to me that DH could do more to help me out, but chooses not to because "I can wait on him"......The doctor suggested rather strongly that he walk....does he?,,,,,,Only to the bathroom and back to his sofa recliner.......We go the monthly speech therapy sessions where he seldom does what he is asked to do. I went to my primary at the end of last year and was put on Zoloft and Trazadone to calm me and to help me sleep. It has helped, but I'm still at a very high level of anxiety.......I guess I'm afraid Fred will never be able to swallow and this is to be the rest of our lives.......not a pleasant thought. We don't have a lot of money so hiring outside help is almost out of the question.....I just don't know what to do at this point......I turned here with questions, hoping someone in my position would give me some advice.
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Sorry; I just realized I didn't address the post title question. In retrospect, I would choose periodic respite instead of weekly respite, although there's nothing wrong with weekly respite. I just found that caring for someone on tube feeding is so demanding that respite is needed more often than weekly.
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As I wrote on your other post, I've been through this and can attest to the rapid onset of exhaustion when providing support for someone who's NPO. Our feedings were every 4 hours, so my day was planned around that.

A home care nurse provided some relief but not after home care was D'C'ed.

The first thing I would do is scale back whatever you do other than caregiving. Reassess such chores as cleaning, cooking for yourself, how much time you spend, and figure out ways to condense the time. Cleaning doesn't have to be done weekly as most women do.

The more important issue is how to conserve your energy, mental and physical. If you've never had OT at home, do some online research for energy conservation of home activities. I've saved all the literature our OT's provided and used it myself.

One of the important things you can do is not only limit these chores, but provide respite for yourself inbetween each one. Vacuum, then spend some time resting and relaxing. Same with laundry and other chores.

This down time can be a real energy saver and allows you to recuperate before tackling another chore.

If you have to, list all the chores you now do and decide which ones can be scaled back or done less often.

Also, list all the things you used to do before - activities you really enjoy, especially ones that can be done in little spurts, such as reading. It's critical that you maintain some level of personal time for these activities. I didn't, and I burned out quickly.

And, contact your local Gilda's Club to learn if there's a support group for tongue and throat cancer survivors. Even though it might be hard to make the meetings, you might be able to develop a support network based on phone calls and e-mails. Gilda's Club in our area provides wonderful resources and support, including music and art therapy, and separate meetings for specific cancers.

CURE magazine is another good informational source. It addresses a wide variety of cancers as well as articles ranging from chemical analysis of specific issues to coping ones. I've found it to be very, very helpful. You can read articles online or do as I did - order a subscription free to those dealing with cancer and their caregivers.
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