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.
Wow, how do you do it? You must be one awesome, superwoman to have done this job for 9 years. My hat is off to you.
Have you considered nursing home placement for your husband? I don't know if that's what you mean by step aside, but yes, I believe that you've reached the point where he'd be better served by three shifts of caregivers . You don't step aside; you're his loving advocate. Plenty of work to be done there! Have you applied for Medicaid for him? Does he have a caseworker? There are others here who are far more know legal than I about those matters, but I think the time has come to let others do the hands on caregiving.
I'm so sorry for the loss of your son. Bless you, and bless your loving efforts.
Hugs to you!
Justlee, if you are in the US, there are some things that may help. Talk to your husband's doctor about arranging for a certain service that many elders receive. The service includes PT, OT, nurses, and bathing for about 10 weeks. A social worker also comes in, which you may find the most helpful. He/she will evaluate your financial and health needs and know what you may qualify for. My first thought here is that your husband may qualify for Medicaid. If he does, then it would help whether your husband goes to a nursing facility or stays at home.
If his doctor won't prescribe the service, I would still recommend talking with a social worker with your county government. They have knowledge of the programs that are there to help you and can point you in the right direction. Please keep in touch with us here to let us know how all is going.
I keep trying to focus on the real good things about life that matter, but it has all fogged over with the real bad, and the bad are winning. When we lost our son we both suffered so much. Mentally I know it is true - he is gone - but I doubt I'll ever accept it or believe it in my heart.
The truth is, I don't know what will make me happy. Will I be happier without him here or just so totally lonely and still dealing with our problems? He has spent time at long-term health facilities on/off over the years and at first I welcomed the time to get caught up on things and to just do nothing, but then as the time went on I really did miss him.
He also did not do so well there and often became very lethargic and distant. I am fearful that a nursing home, especially one that is affordable to, will kill him. I think he'll just give up. Is that fair to him because I can't pull it together?
I know he doesn't want to go to a nursing home. When the topic has come up he just looks so sad that I realize that I don't know how I'd force it on him.
I've even thought about selling the house and moving into an assisted living place, even though I don't need it at all. I don't even know if that is allowed.
He and I had a good life together. We always supported each other. I don't know how to turn away now when he needs me most. But if I were say something hateful to him and those were the last memories he had of me, I don't know how I'd bare it.
I'm just very confused.
I've did have a good conversation with a social worker one time. She gave me a list of options that might be helpful, but all of them had long waiting lists or my income was just over the amount for getting any help. I even tried to find a way for him to get back/forth to his doctor's appts., so I could look for another job, but that wasn't available either.
I did not exhaust all that was on the list. I kind of got discouraged 3/4 of the way through. I guess I should try again and go ahead and get on the waiting lists.
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!
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.
That is what I want. Thank you for finding the words that say it.
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.
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.
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.