Major Changes as Spouses Age

@joyces I know a.transplant recipient is required to have a designated caregiver (or two). Recovery is not possible without a dedicated caregiver in the early days post transplant. Going from partners in relationship and business to suddenly patient and caregiver must’ve been quite the seismic, but necessary shift. It sounds like the transition out of those roles has been imagined differently by each of you. How disappointing to not get your partner in fun and business back.

Are you able to let go of some of the caregiving duties? Is it possible that you not fetch, haul, pack and serve? Easier said than done, I know. But might that be a thought?

Actually, because Marty was a brittle diabetic before we got married 34 years ago, I've been a sort of caregiver since even before we were married, so that wasn't really much different. In fact, I was amazed at how few additional things I was required to do. I'd love to ease up on the caregiving activities, but each time I refuse to serve, there's an ugly shouting match. I hate dissent, so avoid those as much as possible. I use up my entire tolerance for ugliness by trying to get him to walk a short distance at least once a day. If I had more backbone, I'd insist that he do the list of suggested PT exercises, too...but I just can't tolerate that much fighting. It's also disappointing that, after all the years I've cared for him, cooked to meet the demands of his diet, he's never been willing to do anything similar for me. During the four years I was actively ill with Meniere's, I worked more than full time, did the housekeeping and the yard work. Ditto when I had cancer, ditto now that the Meniere's monster has returned. As my daughter has always said, "life isn't fair, not even a small picnic."

Oh my goodness, @joyces, I can only imagine what you are going through. I have been through a few similar things but nothing nearly as drastic as you have, and your husband is younger than you to boot!
I wish I had a suggestion of how to make your husband wake up and realize that he needs to shoulder some of the burden of life too. I think women in general are often more able to be independent (sorry guys, I know that’s not true of all men), and expect to be taken care of.
I too tend to be non-adversarial and find it easier to just put up with things rather than have conflict, although I have been a little less that way as I have aged - again, just a little.
I do not like ultimatums but since your husband has chosen to be entirely dependent on you for everything maybe it’s time to take that tack and tell him that he has to pitch in, or you could just hold back from doing everything for him and force him to do for himself. I realize that’s harsh, and before taking those measures you should have a session with a counselor. Even better if you can get him to go to a counselor with you. I think counseling is your best option if you want to preserve your marriage.
JK

Hi @joyces I know you asked for women's responses on this, but thought I'd chime in anyway 🙂 I'm Scott and I was my wife's caregiver during her war with brain cancer. I quickly learned three things: caregiving is an intense grind; the disease our loved one is fighting can easily take over their prior personality, emotional stability, etc.; and once chronic disease attacks a loved one, life is never even for both parties nor what we want, hoped for, or planned.

I know each patient, life, disease, etc. is unique, so all I can do is share what I experienced, saw, etc. First when my dad began to decline I saw my mom badger him endlessly to do all the things he used to be able to do. He simply couldn't, nor was he able (psychologically) to explain his feelings, verbalize how he felt about his new limits, etc. Second I saw how difficult it was for my wife to come to terms with her limitations/changes from her cancer. Many were physical, but many were inexplicable mental ones such as suddenly not liking many of the interests and activities she used to enjoy, even to forgoing certain foods that had been lifelong favorites. I then saw our 42 year old son suffer a serious heart attack. He is physically recovered, but the psychological toll it is taking continues and is far more challenging for him! There are things, simple things, he is still too afraid to do post-attack.

Personally I suffered a stroke and lost my sight and hearing on one side. While the doctors told me there were lots of things I could get back to doing, it took me months longer to do some and I still will not do certain of them. My best friend simply doesn't understand why I would 'limit myself' when I refuse to do certain things that I used to do, but I simply can't!

I believe many times when we have life-altering or chronic health issues we feel fragile. Often times it is short lived, but sometimes the effects on us last far longer, become ingrained, while some are simply impossible to overcome/ignore. I think it may be some level of depression, but I'm certainly not a medical professional of any kind so that is just my view from the feelings I personally have over my own health issues. The human mind is so incredibly complex!

How old is your husband, if I may ask?

Strength, courage, and peace

@joyces What I am about to say may be taken a few different ways, by many. I am speaking from my own personal experience, and am not lecturing, nor telling you what to do. It comes from a place of concern for both of you. People are creatures of habit. We get used to doing certain things, and even enhancing that. Those actions are not always a positive.

Doing for others can be seen as a sign of partnership, of love, of wanting to help. But sometimes what we see as being helpful, can be the other person taking advantage of you. As it escalates, each one loses their true self in the spiral. I have been there/done that/got the T-shirt! The one doing becomes resentful, angry, exhausted. The one receiving may also become resentful, angry, and exhausted. Changing the behaviors that have become habit is very hard, but not not doable. But it takes both parties to want to make that effort. Without cooperation and working together to be better able to have a good relationship, it won't happen. Stating limits will no doubt cause frustration as a new normal slowly evolves. That frustration may come out as irritation, ignoring the other, shouting matches, slammed doors, etc. One thing I never allowed was physical abuse. And when I tried to make the changes to a more balanced relationship, and received no support/effort from the other person, I had to make the decision to stay or go, for my own well-being. That simple. Because I had to value myself more.

Was it easy? Heck, no. Did it all take a toll on me? Oh, you bet! Physically, mentally, emotionally, financially. But having made the decision to have a healthier relationship, I tried what I could to accomplish my side of things. Was it worth it? Yes!

He won't change unless you do, too.
Ginger

As far as counseling goes, this horse can't even be led to water. <g>

Reply to Scott, Vol. Mentor: My husband is five years younger, now 73. We went through the big life changing event a couple of years before we were married, when he was diagnosed as diabetic...and turned out to be very brittle (blood sugar levels often have little relationship to logical things like food and exercise vs. insulin taken. Our primary doc at the time kept impressing on both of us that we could live normal lives in spite of the disease, and, for years, we did.

He current level of helplessness was brought on when he announced he had retired and therefore would do nothing because he had "earned" it. He's been shown at various times that doing any sort of exercise quickly reduces his lower back pain, but he refuses to admit that's the case. He was able to work full time, fish weekends, even add three evenings a week of dialysis to his routine before his transplant, but the transplant, instead of meaning he was free from dialysis and a very strict diet, meant that he spends all day reclining or lying down with no exercise, which increases the back pain. He's been told by several docs that he needs to move to reduce the pain, but he flat refuses.

At the same time, I've lived with the limitations of Meniere's for nearly 40 years without allowing it to take over my life. At 77 (won't be 78 for over a month) I hike in difficult terrain as a volunteer data collection person for our state fish & game agency. Although I have zero normal balance function, I do vestibular rehab every day to maintain my ability to move about. Some of the instream surveys I do are a challenge to far younger people; we've hung ropes at various extremely steep places to aid us in covering our basic surveys. I might have "wussed out" when I first had serious problems with Meniere's, but my son had set an excellent example when he had a disc in his back deteriorate when he was only 16: although told that he basically couldn't do anything because the problem would spread up and down his spine, he asked for back exercises, does them daily (he's now 56), does some active exercise every day, and keeps his weight in check. He was originally told that he'd wind up in a chair, but he continues to hike, play softball and basketball, care for the acre he lives on. It is possible to decide how well you want to live when you have a chronic problem, whether or not you're going to allow it to run your life. When I was initially diagnosed, the doc told me to "quit your silly job, stay in bed, and take Valium." Fortunately, I didn't do that so am now far more active than my contemporaries--"in spite of" the disease.

Again, the pain levels of my husband's disease are actually lessened when he can be beaten into moving. His problem is far different than something that can't be made better or a disease that is progressively worse regardless of what you can do.

Response to Ginger, Vol. Mentor: Yes, I was in that situation 45 years ago, when I determined I could afford to walk away from the house and its contents, taking only my two kids, two dogs, a cat, my truck and my boat. I claim it was an extraordinarily liberated escape...I made more than he did, so I had the luxury of just walking out, not having to ask for child support (which he never would have paid willingly). So, I've been there, done that, got the Tee-shirt!

Now, it's a different situation. Although we can live comfortably in our little bit of woodland paradise near the ocean, we don't have enough money saved so that I could give him all the money and stay here. Actually, we don't have enough money saved to enable us to live separately. We're in a fortunate and unique situation here: extremely low taxes due to the fact that we have no access to public water/sewer and our acreage is taxed as a single lot, we own the place, we have low monthly costs and can heat the house with our Earth stove, using wood that simply falls on our land. We live here for an average of less than $3,000/mo, but to rent even a studio apt. in this tourist town means a minimum of over $1,000/mo, which doesn't leave much if we were living separately, in greatly reduced circumstances. In addition, there's no way he could live unassisted. I simply hope that he won't get to the point where he'll need to move to assisted living soon.

@joyces I applaud you, for forging on, and your son. The story of your son reminds me a bit of my niece's son. He was born physically disabled due to cerebral palsy. The doctors said he would never walk. My niece would not take that sitting down. She worked with him every day and he now is in his 20s and runs 10Ks. Her husband left after the son's birth, he apparently could not deal with it.
I too am of the tenacious type that tends to not allow myself to be sidelined. My PCP has expressed that to me numerous times. I can't imagine being any other way. Even when I was having bad days prior to my liver transplant, I resisted having my husband doing things for me.
That all being said, I think for your own sanity, since you can't even "lead the horse to water", you do need to seek counseling for yourself for help in dealing with your situation. Most insurance plans do cover some counseling and you would probably not need many sessions.
Does your husband really understand how much he is damaging his own health, and that he could end up in assisted living? I have read that if your spouse is diagnosed as having Alzheimer's the best thing to do is to get a divorce so that you are not liable for assisted living expenses. I would think that would be true of any long-term condition that would require assisted living, as difficult as that would be. It is something I have given thought to and realize how nearly impossible it would be, because my husband's father, aunt, and cousin have all had it. At this point he is older than any of them when they developed it so hopefully he is in the clear. Very few people are prepared for the expense of long term assisted care unless they purchased long-term insurance. We did not, and I just always assumed I would die quickly as both of my parents did, from heart attacks. My heart is pretty good though.

@IndianaScott I knew your wife had passed away from cancer but did know the other problems you have overcome. You are obviously a very strong person. I hope I could be that strong if faced with problems such as yours. Not everyone is, some do just succumb to them and stop trying to overcome.

@gingerw I can imagine how difficult your situation must have been, but you had the strength to do the smart thing. I think that decision gets far more complicated when there are children involved, and if the person leaving the marriage cannot be financially independent. Regardless though, it is never easy to leave a relationship that you have invested years in.
JK

@joyces, @gingerw, @indiana Scott.......I have reread this post and said......no, that is different than what I have experienced, for several days. So I still feel like if there is even one phrase or sentence that helps, it will be worth it. If nothing resonates, at least you will have had an introduction of "male menopause". Sometimes triggered by the onset of a physically debilitating injury, surgical intervention or just plain feedback from the mirror.....the relationship can begin to teeter-totter.

In our village of 4,000, we had 5 men in their 70's who all of a sudden just went off their feed. One took family money and passed it out to the homeless and sheltered them in their home. Another who had just retired as the COO of a high tech technology company immediately got a bachelor pad in downtown LA and spent lots of $$$$ on prostitutes. He further embarrassed his wife by having them accompany him to church.

And then there was my situation. We had a business together also. He just stopped showing up and refused to do the customer service issues, e.g. packing and shipping. He thought that kind of work was beneath him and reminded everyone he had retired from the airlines.

Came the day when he had all of his teeth pulled and the decline sexually, socially, financially, just took off. The behavior I saw was hours in the woods on his cell phone sitting in his car, purchase of a year's membership at a gym (45 minutes away) so he had no time to help me, the purchase of a new convertible because I had one 40 years ago. And finally, he came to me with an ultimatum, he wanted a man cave added onto the house. I told him he could have the home office and studio where we met clients. That didn't cut it. He wanted his own space.

So, I contacted the PCP that we shared. She told me that his symptoms were the result of having to face the issues of aging without acceptance. The anger and acting out came from the decision to continue with the business. He had retired in 1995 and we opened the business in 1998. The next stop was my attorney. She only knew me because her friend was my business attorney. And she too said she was currently working on several very similar divorce proceedings. The loss of my husband's "Airline" good looks was the proverbial straw that broke the camels back.

So...just like you, I lost money and a partner of 24 years. Before the judge signed the divorce decree he called me up to his podium and asked me if I really wanted to let him have his retirement and other investments. I said yes, I don't want to do this ever, ever again. He looked at me and said, "we don't want you to have to live off the state either."

Here is the article on Mayo Clinic
mayoclinic.org/healthy-lifestyle/mens-health/in-depth/male-menopause/art-20048056

So if this rings a bell fine. If not....maybe you know that you and I have walked down the same path in many ways and that I feel the pain, the anguish and the stuck between a rock and a hard place decisions that have to be made.
Be safe and protected.
Chris