Should I step aside? - AgingCare.com

Should I step aside?

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I am in the ninth year of caring for my husband. It began when he was 59 (I was 52) when he had a stroke and three brain aneurysms coiled. He ended up w/ 90% usage in his upper body/arms, but very little in his legs, which resulted in him using a wheelchair. He also could not read or write like before. His communication skills also took a pretty big hit.

Life was different - restrictive - and he could not do many things he was used to doing and liked doing. He grew frustrated and depressed. What he could not do, fell back on to me, including running his business while working full-time.

This went on until, due to an ongoing external internet theft (long story) his business began to fail until finally two year's ago it was pretty much gone. I worked double-time on the business to try to keep it from failing, but I was not successful at all.

During the time that I was working both jobs, I was also caring for all of the household duties (lawn, bill paying, housekeeping, groceries, cooking) along with taking him back and forth to his many doctor's appts.

It was also during this time that the Drs. discovered he had prostate cancer, but due to his lack of mobility they would not remove his prostate gland and treated it w/ other methods, including massive hormone injections and later an orchidectomy. This caused him to go into an even deeper depression, plus the physical side effects including loss in bone density and muscle mass.

It also caused major problems with both urine and bowel (laser treatment side effect) incontinence. He has also had severe problems with urinary tract infections that quickly turn septic and are life threatening and mentally debilitating to him.

He also suffers from nerve pain from the stroke and is completely addicted to pain pills and zanax (sp?) which adds to his weakness and has contributed to several falls when transferring or trying to stand to use the commode.

(Did I mention over the nine years that he has broken both hips?)

He uses an electric wheelchair inside the house, which does allow him more freedom, but it has also caused scratches and paint removal on several walls, knocked holes in doors, walls and molding, bent the front of the oven, dishwasher and fridge, and torn up most exterior door frames. The house is a mess structurally and I am a lousy carpenter.

He needs help all of the time - in/out of bed, on the commode, diaper changing, sheet changing, getting dressed, getting food - you name it, he needs help. Because my full-time job is home based, I am here to help, then work all night to make up my work for my job.

So, now, in the ninth year, I am about to go crazy. We've gone through our retirement because my full-time job was not enough to pay the bills. I owe the IRS money and I am looking at losing our home, even though we just have four years left to pay. I am also looking at having my income garnished.

In the meantime, he has grown even weaker. I cannot keep up with all of the soiled laundry unless I stay up all night to do it. I have no natural nursing skills and cleaning up a grown man's urine and feces day in and day out truly makes me ill.

Seeing our house destroyed just weighs on me day in and day out. I am ashamed to let anyone come here so I am basically a recluse. Neither of us have family near by and now my sister is dying of inoperable cancer, but I cannot leave him to go see her. Our only son died three years ago. I just feel like I cannot breathe anymore.

I have never been one to lash out or yell. I always respected and loved my husband, but i can't seem to find that person anymore. He's gone and I find myself saying some pretty hateful things to him. I feel guilty afterwards, but it is happening more and more and I am very ashamed.

I also find that I am not as attentive and I feel resentment when I have just tended to him, then turn around and everything is a mess again. I need to go find work, but that means putting him into a rest home which we can't afford.

I just can't see where there is any real reason to hang on. Everything is gone or soon will be and if he goes to a rest home -- it really will all be gone. I'm tired of caring for him, but it is all I have left of him.

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Get hubby on Medicaid now and into a nursing home. Make sure Medicaid Estate Recovery (MERP) puts a lien on the house. Why? Because MERP will not attempt to seize the property until you are dead. As long as the MERP lien is filed before the IRS lien, MERP will take precedence and you are, in an odd way, protected from the IRS.
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justlee, it is time to take off that Superwoman's cape, it is too much for anyone to do... you are doing the work of 3 or 4 people.... how you have taken on all this for 9 years is amazing... most of us start crashing by the 3rd or 5th year.

Please note that 1 out of every 3 Caregivers die leaving behind their love ones for whom they were caring. Those are not good odds. What if that happens to you? Who would care for your hubby? It would be so much better if you sold the house, no more mowing the lawn which is a huge chore, and moved into a retirement community or some type of independent living, where you BOTH can enjoy what is offered.

If hubby still balks at moving, tell him you can't keep doing this any more. And see your own primary doctor, as all this stress can cause medical issues [believe me, I know]. Maybe even have the doctor write a note saying you can't do this type of caregiving and property management of your home any more as it is affecting your help.
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Wow! Your story has just stunned me. I am sorry for all of your troubles and I really hope you get some help ASAP! The fact that you are at the end of your rope, you really do need some respite care. I'd have been at the end a long time ago. I know your husband doesn't want to be placed in a NH or a skilled care facility but it would be the best both for him and you. I agree that it will be hard but it sounds as if at one time, you had a great relationship, and I think if the pressure of 24 hour care is off of you, you will get it back. Many blessings to you and your husband.
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Justlee, in addition to all the other comments, may I suggest you contact 'Habitat for Humanity' or Catholic Charities to see if there are volunteers that might help in some home repairs. One of the Catholic Charities agencies near me does provide such repair services and no, you don't have to be Catholic to access them. Ditto on finding a support group for yourself.

You may also be able to use some food banks to stretch your income dollars. There are several near me where more than 50% of their clients are working full time! Good luck and keep us posted.
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Justlee, I'm so glad everyone else has such great ideas and supportive words for you!

When was the latest time YOU went to the doctor? You sound worn out and beyond depressed. Will you do me a great favor and make yourself an appointment with your personal physician as soon as you can? Your poor husband is going to be in a terrible fix if he doesn't have you around.

May this new year bring you both only good things.
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"Do not "step aside." Do not even think about "abandoning" this person you have shared your life with. You may need to reorganize your living situations. You may need to make a lot of changes. But keep your love strong. " - jeannegibbs

That is what I want. Thank you for finding the words that say it.
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windytown, that is a very good point.
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I know you say his communication skills have deteriorated. How is his comprehension? Can he understand what you tell him? Can he reply if given enough time? I am wondering if the two of you can have several serious talks about what should come next. The kind you used to have when you were sharing the load as equals. He doesn't want to go to a nursing home. You don't want him to go to a nursing home. But what are the feasible alternatives? Can you at least share your feelings? Both of you must be very sad and very frustrated. Can you share that?

You've come so far together. I hope you can continue to make this journey together and be there for each other, even if you have to live separately. If he were in a safe place, getting good medical care, and you could work full time while spending a few hours with him each day, would that be an improvement? Having someone else clean him up repeatedly might reduce your understandable resentment and make your time together more loving. Making some progress on your financial woes might make you both feel better, and he could know that his stay at a care center were making that possible for you.

I really do not know how on earth you both made it 9 years with such minimal help. Could your husband be on Medicaid now? That might help financially.

And, by the way, it isn't failing when the task is impossible. Sometimes just surviving is a huge success.

I think it is time for another detailed talk with a social worker who knows the resources in your county.

Do not "step aside." Do not even think about "abandoning" this person you have shared your life with. You may need to reorganize your living situations. You may need to make a lot of changes. But keep your love strong. Reduce the circumstances that frustrate you to the point of saying hateful things. If you can return to being a loving wife, it may more than offset the disadvantages of turning the caregiving over to professionals.

Do keep us informed about your struggles. I know I am not alone in saying your story deeply touches me and I care about you.
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Justlee, I have no practical advice, just know there is no shame for asking for help. You and your husband paid a ton of money in taxes and social security and medicare/medicaid in your lifetimes.

It is money YOU paid in. It is YOURS. The government owes it back to you. There is no shame in that. The shame should be on the government for making you feel that way. It IS the money you earned.

Don't feel bad for asking back for it for you husband's care and your care too! You earned it and worked hard for it!
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My husband and I always worked. We took pride in never owing more than we could afford. It is very difficult for us (me) to admit that we need help after spending a lifetime saving for the future, only to find have the future arrive 10 years too soon.
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