What do I do now? I don’t even know what question I’m to post. I just need to put this out there...
The brief history. Married 1980, I was 26, my wife was 27 and a dental hygienist. My wife diagnosed with MS 1983, wasn’t too bad at first, but we didn’t realize that shock had set in for both of us. My job, took me overseas every 6-8 weeks. Her progression was minimal yet noticeable. We had a daughter in 1988. The stress of the ‘94 Northridge earthquake put her MS over the edge. I was compelled to slow my business travel and start caregiving as needed/helping with mornings and our daughter (she was my real strength as I tear up while typing this, I wish I still had such strength). By 1996, my job was gone as I was now a full time sole caregiver, back and forth with my parents, dad now with Alzheimer’s progressing and it blindsided all of us. That’s another story but quite integral to the stress of everything. In 2012 Kathy flipped her scooter and brain surgery and life support ensued. She had some cognitive issues before this accident, now even worse. In 2014 as I’m lifting her up in bed to change her top, her back snaps. Her L3 breaks due to the severe osteoporosis that accompanies paralysis, she is now a quadriplegic. The guilt is heavy, I had completely given my life to Kathy and MS in 1995, 20 years later I have no choice but to have her in a home. She’s gone past my ability to care for her safely. Oh yes, insert 2002, her now 105 year old mom moves in with us. She has mild dementia. I watch over grandma as she tries to help me as I’m now mom, dad, caregiver and caretaker. Her help challenges me terribly, I find I am now duplicating things as her help, makes things worse. Grandma’s other daughter lives 30 minutes away and shows up a couple hours about 4 or 5 times a year. I just want to grab this sister and yell at her. Now, my parents have passed away, (they weren’t able to help me), but the Alzheimer’s nightmare is gone. My daughter is married now, our first grandchild is 5 months away. My daughter and son in law live too far away, my sister's family is 4 hours away. I’ve worked so hard these years, I know that. I have done my best over these years to be frugal and am left with too much money to Medicaid assistance, yet not enough to live without financial worry. Kathy will never know this. I see her 6 or 7 times a week and hired a helper years ago to be a 10-12 hour a week companion who drives her to therapy. Her home is comparatively inexpensive, but is draining us, and try as I can, I can’t cut costs back further then I have. Years ago I had become a casualty, I just didn’t get it. Yes, I had a therapist. She was recommended by the MS society, and knows what my life has been. She’s at a loss, I know that. I have a friend or three who work, and will never know what this life style has done to me inside. I’m alone and terribly lonely, I’m so tired all the time as I barely sleep. I feel so beat up and drawn out. I think about female companionship, which I miss, yet how can someone relate to me, and me to them. For those of you reading this, don’t mistake this thought as a sexual one, it’s not at the top of the list. Companionship is. Someone who knows this fight, as they have been there or are there too. That light at the end of the tunnel is getting smaller and smaller. I posted this under, “Depression.” I guess that’s appropriate. Matt
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Of course you must know that you shouldn't feel any guilt for the L3 break, as that would have happened with anyone else caring for her. But still.... For that to happen on top of everything else and with all the loving care you had provided must have been devastating. Again, I am so very sorry to read of this heartbreaking situation.
I am very sorry to hear about everything you have been through. It is a lot for one person to bear and only normal to feel tired and burn out by life. I know most caregivers to continue to push forward even when we want to give up.
There is still hope and there are options. Have you considered talking to social worker, family therapist, counsellor, pastor? There are many resources in the community and through church, but sometimes we don't know where to look.
I might even consider a support group in your community. And there are also MeetUp groups that might given you another avenue to connect with more people.
I know its not easy and you are doing the best you can. I hope you can find the right resources to aid you.
Of course you crave companionship. That's how we're built. We need other people. There's nothing wrong in wishing you had that in your life.
I wonder if there's a therapeutic group you can attend? Your therapist may be able to help you with this. It might be helpful to be a part of a group of people whose spouses have had or do have MS. The group itself would be helpful but meeting others who are in the same situation as you might be just as helpful. Google "therapy group MS" and then your city and state.
There is more to life. You just have to find it and you made a good choice in sharing your story here.
Will reread and digest more. Meanwhile, just want to welcome you here as a bare minimum. Back later.
You are amazing--simply amazing. My DH is a good guy, but when I am down, with a cold or recovering from surgery--he is useless. I KNOW that if I am ever disabled, he will plop me in the nearest NH and not look back.
I cared for this man through hepatitis C draining his energy away and ruining his liver, nursed him back from a liver transplant, a stroke, 84 weeks of chemo, post surgery and then a near fatal motorcycle accident. Without a single word of thanks.
It's beyond exhausting and depressing. I crashed and burned many, many times. I had zero outside help and support, as my kids were all starting their own families...and friends tend to duck and run when the going gets tough....as you've found.
I'd look for groups online that are either all online or even as a way to find support groups or groups of like minded individuals that you can join up with--Audobon Society comes to mind--bird watchers. Hiking groups. Groups who are in your situation and need companionship! Book Clubs--I can't think of many more right now, but they're out there--I'm sure you could find "friends".
Please don't beat yourself up about having to move your wife to long term care. MS is a horrible disease, I have several friends who have it--seems like it is "personal" to each patient. I'm sorry for what you are going through--but you sound like a stellar guy. I hope you find friends and activities and can find some joy in life.
Come back and let us know how you are, This site is filled with the most compassionate people I "know". Bless you in your trials. My heart aches for you.
(BTW, JoAnn--MIL would be 121. I highly doubt she's alive.)
Men who have done what you have for your wife are few and far between.
Your need for female companionship is natural and normal and in no way unfaithful to your wife.
This is my personal opinion and not a suggestion about what you should or should not do.
In your position, therapy would certainly be high on the list just as a way of grounding myself.
I really would not wish to join a group with similar experiences to share mine. You know what you have been through and are going through, so you don't need to spend a couple of hours talking to others about it.
MS is a horrible disease and there is only one way it will end and in your case could last many more years. Do you know what Kathy"s end of life wishes are?
Does she want to continue to receive life preserving treatment. for example tube feeding to keep her alive or if she gets pneumonia or a UTI would she refuse antibiotics? Don't get me wrong I am not suggesting you hasten her death and if she is already recieving tube feeding I certainly would not consider removing it to let her die. My decision would be whether to start it. I remember the case of Terry Shriver and the anguish her parents went through when they had no control over her fate. i won't say whether the decision was right or wrong because that is a personal feeling. But it is important to know what Kathy wants.
Do you or did you have any hobies or interests that still appeal to you? Do you like sports. Could you volunteer for something like Habitat for Humanity, A food pantry, the local school, or so many other charities that could welcome your help. Is there anything in your previous line of work that you could reconnect with. Even find at least apart time job at a lower level in the same kind of organization.
You have done a lot of traveling so something like a tour guide or even a courier. foreign governments often need people to carry important papers overseas, nothing illegal but very secure.
I don't know how kathy's cognition is but i wouldn't leave her if she would realize you would be gone and be upset.
Come back as often as you can there are lots of caring people here who have gone through similar experiences.
You deserve the husband of the century award! 🏆
I'm so sorry that you've had such a hard life. Everyone should have a chance for happiness and it seemes like you haven't had your turn yet.
You have been a dear, devoted husband but there is nothing more you can do for your very ill wife. Please don't feel guilty to now cultivate a life of your own. The above posters have given you a lot of good suggestions to how to get out there and socialize.
You need to involve yourself in clubs, organizations and/or groups that would be of interest to you. You could have something new to discuss with your wife when you visit.
Matt, this is a radical thought. Do you have a good relationship with your daughter and Son-I-L?
How about moving your wife to a nursing home nearer your daughter and you get a small place close also?
I think you'd want to be close with your new grandchild and daughter and family could visit her mom too. You would be able to finally get your joy by being a grandpa.
It's just a thought. My good wishes and prayers are with you.