I'm reaching the end of my rope with my hubby. How do I continue on?
My husband is 67 and I am 63. We have been married for 43 years. He had a stroke in 2003 and while he suffered no real debilitating side effects other than aphasia, his mobility has declined over the past 14 years to the point that he is now bedridden and unable to stand or walk. 6 neurologists have not been able to diagnose him with any obvious disease or conditions beyond needing a left hip replacement (he had the right hip replaced 4 years ago and it had no effect on his mobility). He cannot have the HR because he has atrial fibrillation and anesthesia would be too risky. He has had occupational and physical therapy at least 3 times and was in a rehab facility for 4 months this year. Each time he has had therapy, he makes little to no progress and Medicare will not pay to continue his therapy since he shows no continual progress. He does not do any exercises the therapists recommend and just watches television 17 hours a day, 7 days a week. He believes his immobility is psychological, but we are unable to find a psychiatrist or counselor who makes house calls and hubby is unable to get in and out of a car. Going to the doctor is a major event on our local community bus and my son has to come over to help get 300+ lb. dad back up the handicap ramp. Last time we went, I was so scared rolling him down the ramp, I was almost in tears. Making our home handicap accessible is not in the cards. We do not qualify financially for any sort of aid including lifts, shower remodeling, etc. We pay $135 a month that we don't have to rent a Sit to Stand lift so I can transfer him from bed to chair. It is difficult to maneuver, and he becomes panicked and yells at me.
I get up every morning with the thought of how much I hate my life. Every day is like the movie "Groundhog Day". I have no energy for cleaning or fixing up my house. Some days, I don't even shower and stay in my p.j.'s all day. I drink too much and too often. I am severely depressed. I have the number of a therapist my doctor referred me to, but I'm not sure just talking about my situation will change it. I have two grown children and they help me as much as they can but they have their own busy lives. Day to day I am on my own. Moving to a condo or assisted living would mean dumping my animals and my dog is often my only comfort. We've had home health aides, but as with the therapist, once they go, I am again on my own with hubby. Last time a bath aid came, as soon as she left he had a bowel movement and I had to wash and change him and the bed again. I am truly at my wits end with not knowing what to do. Along with the alcohol issues, I have also developed high blood pressure and fibromyalgia. How do I continue on?
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And you certainly have reasons to be depressed. The thing about depression is that it is brain ilness that changes our thinking to be hopeless, helpless and to feel worthless. It tells us that we stupid, undeserving of peace and love. That we are to stupid, or fat, uninteresting for others to want to help. When your are depressed your brain talks to you. It tells you lies. It's the nature of the illness.
It's a biological illness and thats why you need to see a therapist.
Therapists are trained to evaluate and help you treat depression. They can help you identify your negative thinking, and stop accepting that there is no hope.
You probably need antidepreeant medication. As you would for any part of your body that was sick.
You can get better and find ways to take back your life, but first you have get help with your thinking that there is nothing you can do. If you don't do this, who will?
The therapist you see should help you move forward, not just listen to you talk about how bad life is.
There is hope. People do get better. Please give this to yourself
I for one, wish you all the luck in the world. I will be right where you are in a couple of years. I'm terrified.
One thought that keeps running through my head, and it's real: We buy a duplex, he lives in one side and maintains it, and I live in the other. We can move freely between the two, but we will live separately. That way, we're still married, but I will NOT continue to be hubby's "gal Friday" and by continuing to do ALL THE THINGS, allow him the ability to do absolutely nothing. I have greatly appreciated that he has always worked FT, but I also have raised 5 kids and worked PT, all while caring for our home, aging parents and everything besides bringing home the bigger paycheck.
Hopefully your hubby will sit up and listen. Mine actually went to therapy for about 6 months, but thinks he's cured (not by a mile) so he gave that up.
If hubby finds out his only option is a NH, he may wake up and smell the coffee.
Good Luck!!! And be sure to speak up!!!
Thank you all again for your care, suggestions and concerns. You are all my angels!
My plan (he won't weigh in and won't help me with this) is to "downsize" within the next couple of years to a one level, so stairs kind of home//condo. I am going to make sure he has a bedroom of his own with his own huge TV and a huge bed he can retire to. I plan to enjoy the grandkids and play and travel.
Your hubby is bed-bound, not by choice. Perhaps you can find alternative living arrangements for him, and not affect your own financial situation. Start shopping! If all he wants/can do is watch TV, he can do that in a studio apartment! He can have aides, or you can keep on "doing" for him--but one thing I have repeatedly told hubby--once he's unable to get up and get himself dressed and toileted, he will be placed in an NH. I am so tired of caring for him, and yes, he also weighs nearly 300 lbs. I can't roll or lift him.
I am so sorry for your situation, I HAVE been in therapy for some time and while there is a certain level of it which is mean venting my anger, lots of time is spent trying to find solutions to situations I cannot control. I am also on antidepressants and anti anxiety meds. I KNOW if my hubby were more engaged in our marriage, I wouldn't need any of these things--but it is what it is.
Good luck--Being in a similar boat, I am curious as to what you're going to do.
I think you have a right to just draw the line and start applying for Medicaid with the goal in mind of getting him to a facility where there are more people who can care for him. Your health is already jeopardized and will be further if only from the lifting issues.
There's another option: palliative care, a step below hospice care in terms of addressing medical conditions. I've only learned about this recently.
It's a "spin off" of hospice, with a pilot program, and addresses chronic conditions. The patient can stay in his/her own home. I would think the hip issue is a chronic condition. Contact the last doctor you've seen, or one of the neurologists or his ortho doctor and raise this issue.
My understanding is that a visiting physician and nurse will come; frequency I believe depends on the specific conditions. I haven't yet started the process so I'm still unfamiliar with all the details.
But you could get some help, especially for skin integrity because that's one of the first things I thought of with 17 hours of sitting.
If one of his doctors will script for it, start researching online and contact palliative care companies, with a checklist of what you're looking for.
One of the companies I called was eliminated from consideration b/c although it seemed good, and reliable, it would not commit to sending the same medical professionals - it was a "whoever's available" situation, which I felt would be confusing and disruptive. Elders need consistency in home care, not someone different each time.
Another was with a good company, but the program was just getting started and the only service offered was a telephone conference monthly with a medical professional.
So some companies might be more advanced and organized better than others. Shop around.
Good luck; I hope palliative care can help.
I agree with everyone in that your husband might be better off in a skilled facility. You pay for it via Medicaid and you get a social worker to help you get started with the Medicaid process. Your Dr. can refer you to a social worker.
You're only 63. You're going to wreck your own health being a full-time caregiver to your husband. I worked in home health and I had a patient once who was 300 lbs and when I would finally crawl out to my car after only 6 hours of caring for him I barely had the strength to drive home.
I'm glad you posted your situation. There's a lot of support here for you.
I am not sure of the resolution for you, but eventually his health conditions will get worse - skin breakdown from immobility comes to mind, UTI's, pneumonia from not deep breathing, etc.
How does your husband justify to himself that this situation is ok for you, his wife of 43 years, to have to cope with? Does he not realize the stress you are under? Do you talk about your feelings with him? I would begin to verbalize to him that honestly his lack of participation is making you sick. If he loves you he wouldn't want to see you so hurt & overwhelmed.
What will happen if you injure yourself taking care of him? You have to consider this as well in planning for both of you in the years to come.
If it were me, I might pursue having him placed in a long term care facility through Medicaid. While this is not my expertise there are plenty of posters on this forum that can give you guidance to have him apply & be able to keep your home.
Just because you are married for so long does not mean we are stuck with dealing with our spouse's bad decisions forever. Especially if the spouse totally ignores your needs and couldn't care less about your happiness.
Maybe if you divorce him you will be eligible for benefits you can't get while married to get yourself out of the no win situation you are drowning in now.
I would call his PCP or speak to a social worker to find if there are any mental health providers that perform therapy via Skype (remote) . This may be an option for him. He needs psychological help that you cannot provide to him- he has to be willing to work with a therapist first for his own issues and second to show he cares about you, his wife of so many years.
Yes I am aware of the instincts we have to want to fix things but God helps those who help themselves, & marriage is a two way street. He is not old @ 67, and neither are you @ 63. Again, verbalize how you feel to him; if he doesn't know how you feel he can't help and if after you've told him he still chooses to do nothing, then you know that your life will never get better if you stay with him. That may help you make decisions that are best for you going forward to live the rest of your life. And those decisions may hurt and be difficult to make, but what is the alternative? Being miserable every single day? You can also seek therapy yourself to vent as it's not good keeping it inside as you will make yourself more ill.
Speaking with an objective therapist is often better than discussing your depression with a family member or close friend. Maybe an antidepressant will help you as well.
I hope you find some sort of solution. You deserve happiness. As your spouse needs to recognize this too & be looking out for your happiness. If he doesn't, time to move forward and think of yourself. Selfish, no, not when it comes down to self preservation. Your basic human need for well being is at stake. Are you willing to sacrifice your needs for his for the rest of your life when this man won't do a thing to recognize yours?
He may be eligible for Medicaid, or a lawyer specializing in Elder Law could help him become eligible (spend down, trust, etc)
The doctors would come to him. Given his current status, I think a nursing home is probably the appropriate level of care he needs. You would stay in your home, with your pets, and visit hubby often. If you went daily that would be an incentive to get out of your pajamas.
I highly recommend seeing a mental health professional. But you are right -- that won't change the source of your depression. Your husband really needs to be where there are three shifts of trained workers to meet his need. That won't miraculously solve the problems, but working with a therapist will be far more effective if you solve this problem.
Start by having a needs assessment done. Be very clear with the social worker that you CANNOT continue to care for him at home, even with some in-home help. Your example of the help with the shower absolutely illustrates the problem. You can arrange a needs assessment usually by calling your county Human Services office, or the Area Agency for Aging.
Please keep us updated. We care!
Have you talked to a social worker to see what could be available for him. If money is low, he should be able to qualify for Medicaid while you keep enough of the income to manage life in the community. I know that you need help. Your husband can watch TV 17 hours a day in a facility as easily as he can sitting home. Do you think he would cooperate and go if only for a couple of weeks to give you a break? Maybe if he goes short-term he'll discover that he likes it.