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There isn't much on here about husbands that care for their wives. I expect my wife has Parkinson's, but there are no neurologists that will see her until 5 months from now (July). In the mean time her tremors continue to multiply. It started with her left arm/hand and now has spread to her mouth/jaw and right hand. Her memory is gone. I will put on an overnight diaper, but she gets up an hour later and replaces it, with much difficulty. Any type of sexual contact is gone. I do everything for her. I seldom get more than 30 minutes away from her when she gets lonely. We have no friends, and any family is at least 3 hours away. I'm isolated and burned out. I can't afford to have someone stay with her and insurance/medicare won't cover anything, I'm guessing until she is diagnosed? Our family doctor gave up on her, thus the referral to a neurologist in July, where I am hoping she can get some help with her symptoms.



We've only been married 6 years. She is 75 and I am 65. I never saw this coming. I am committed to the marriage vows, better or worse. I guess I need some advice as to how much is expected of me.

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It's hard to believe that your wife has NO diagnosis, her MD has "given up on her", and that she can't get IN for diagnosis until July.
THAT needs following up TODAY with MD. It it remains the same
STEP #2 is the "ER DUMP": Follow these instructions;
A) Take your wife to an ER.,or call EMS to do so.
B) Don't discuss she saw MD. Just say she can't walk, is incontinent and tremulous. (They may suspect stroke and will get her right into Exam room #1).
C) Once you are in getting the exam you can say how long, and say she saw her MD who recommended neuro consult, BUT you can't get one until July, nor even testing, AND YOU CAN'T care for her at home. That is to say "play dumb".
This should get you an admission.
Admission should get you an MD, a Neuro, and testing.

D) NOW Ask at once to speak to the Social Worker.
Keep asking until you get one. Tell him/her the TRUTH, and that you cannot take your wife home in this condition as don't know how to care for her. Say you are getting chest pain. Make up anything you want. This will buy you days, tests, evaluations, consult with neuro. I HOPE!

YOU NEED A DIAGNOSIS. These are desperate moves for desperate times.

Later we come to your decisions about whether or not you can do 24/7 medical care at home. I couldn't, and I am an RN. I would opt for placement.
That is the time you visit your CPA, consider financial separation so your wife's assets can pay for care, and remain a loving and faithful visitor spouse/visitor to my wife for the duration.

That's my advice. It would be the same for a husband or a wife/male or female. We have plenty of BOTH on Forum. You certainly are correct that culturally we remain a society in which women are commonly given the role of caregiver. However, stick around on Forum a while you will meet the men.

I am very sorry. This is truly catastrophic to see a time when medical care has descended to not doing a workup on a woman in this condition.

I wish you the best. I hope you will update us.
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geddyupgo Apr 2023
Your recommendations are spot on AlvaDeer as always!
Thank you
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Dear Joe,

You may not find a lot of posting by husbands caring for their wives, but much of the information posted can be helpful regardless of who's caring for whom. In this case, however, you have found a husband who has cared for his wife, not with PD, but with Alzheimers. What is expected of you, Joe, is to love your wife, let her know it, and to care for her as best and as long as you can without sacrificing your own mental and physical health.

Every caring experience is different. What is especially difficult is caring for one’s spouse. You are connected emotionally, physically and legally thru marriage vows. Like you, I felt committed, obligated, responsible for the care of my wife. (Obligation, though, can lead to resentment of the situation and indifference to her care).

However, our marriage vows can be an obstacle to our spouse's best care. I realize, Joe, that you are committed to your vows, but that doesn’t mean that only YOU can care for her. I was married to my bride of 52 years. But after years of delusions, hallucinations, wandering episodes, anger and lack of sleep by me, I realized that I had to find her a new home. But I promised her that I would take care of her (“for better for worse”), not some stranger in an institution. Was I reneging on my vows, was I abandoning her? No! I decided that if I could find a caring facility that could ensure her safety and understand her disease better than I could, that, indeed, I WAS taking care of her. If you have a church you go to, talk to the pastor. I’m sure he/she can offer some comfort.

So, consider the other posts you’re getting about what actions to take. I’m merely commenting on your commitment to your marriage and to your responsibility for her care.

I wish you the best.
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AlvaDeer Mar 2023
So good to see you here Sjp.
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I just placed my husband in Memory Care facility. I, too, worried about my marriage vows but he is not the man I fell in love with and he has no recollection of who I am. I feel I am doing the best for him by allowing professionals to care for him. I exhausted my abilities to do what he needed 24/7, now the best I can do for him is to let trained professionals continue his care. This was the most difficult decision I have ever made but I am at peace with having him where he is safe and comfortable.
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Welcome, Joe.

If your wife's tremors are increasing, I would get her to the ER of the best teaching hospital you have access to that has a neurology department.

You need to find out right away if this is an acute condition, or something that can actually wait until July.

On a broader note, I think that as spouses, our job is to ADVOCATE for our loved ones; if hands on care alone is too much, you need to hire aides or get her into an appropriate facility. There is no disloyalty in getting help.
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What is expected of you is what you choose to give. It's a tough road to travel whether you're a husband or a wife, and it's a lonely road.

My dad cared for my mother for four years, and I remember him telling me "My world has gotten so small." Indeed it had, but he nonetheless continued to go to church and to his Rotary Club meetings on his own, or he'd have gone crazy. He also did all the shopping, cooking, laundry, and cleaning.

His health was fine overall, but guess who died first?

Dad.

He was a devoted husband to the very end, and I moved in with them when he was diagnosed with inoperable cancer. Only when he got sick did he hand over Mom's care to me. Even then, though, he didn't want her to be told he was sick, but she figured it out even with her dementia.

Bottom line, he lived up to his vows because he believed wholeheartedly in those vows. I also think it killed him. My mother should have been in memory care long before she was, and his illness might have been diagnosed earlier.

Do for your wife what you think you should do, and being her advocate is the most important. However, you also don't want to kill yourself, so the best you can do is prepare for that possibility. Plan as though she might be alone someday, but don't rake it come true, if possible.

Know your limits, and don't martyr yourself.
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Waiting until July is unacceptable period! I wound up needing a neurologist and was able to get a virtual appointment in days. Just to ask questions and he wrote a stat referral for an in person visit right away. Get her to the ER downtown asap for a bunch of tests to be run including brain MRI for stroke. Take this one step at a time. See an elder care attorney about finances, Medicaid application, selling your home if need be to pay for managed care. You can't make informed decisions w/o all the facts!

My heart hurts for you. Advocate now for both of you and don't back down! That's what it takes these days to be HEARD. Sad but true.

Best of luck.
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JoAnn29 Mar 2023
Where I live it could take this long to get into a Neurologist orvant specialist.
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You are not alone. My wife of 59 years has fairly mild dementia but is physically almost totally incapacitated. Her condition has deteriorated gradually over 5 years or more. I was able to care for her myself for a long time, but over a year ago she had an episode at home that nearly killed her. By that time I was having outside caregivers help me, and the caregiver told me I needed to call an ambulance in the middle of the night. We took her to the ER and found she had a UTI and sepsis. Up until that time all of my friends were telling me that I was looking pretty haggard myself. Indeed, I had lost weight and was not getting enough sleep, and was unable to leave the house for more than 20-30 minutes except when I had caregivers to cover for me. Like you, I did not want to place her anywhere since I felt like I would be abandoning her. But the trip to the ER scared me, and led me to conclude that I was no longer competent to care for her by myself at home. So after 10 days in the hospital and 30 days in a skilled nursing facility, I placed her in a nearby Assisted Living facility. None of these places are perfect, they tend to be understaffed, and they can’t respond instantly to a call button for help getting out of bed to go to the bathroom. But I feel they are more qualified to provide the necessary medical attention than I was able to provide. I try to visit her a couple times a day, and even am free to take some short trips. Many of my friends tell me they were really worried about me, and that I look much better than before. I now have time to resume my 5 miles of walking per day, I am eating better, and, most importantly, I am getting my sleep. There is no doubt my life is much improved, and I feel my wife is receiving better care than I was able to provide at home. It was very difficult for me to take the step of placing her in an Assisted Care facility, and I probably wouldn’t have done it when I did but for the realization that I was actually exposing her to more risk trying to care for her at home than she would be exposed to in a facility. Again, none of these places are perfect, but I feel I am honoring my vows by providing the best care that I can, and being there as an advocate for her, which is something I care do by being there on a regular basis. And I am better able to look out for her wellbeing since I am not bogged down in the minute by minute care, and I am freer to look after her needs from a big-picture perspective. Your loyalty to your wife is commendable, but you have to consider whether you are doing better for her by providing the care she needs while preserving your own health so you can be there for her for the long term. Good luck.
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BluSky1 Apr 2023
How did your wife react to you placing her in AL, or was she able to understand the situation? And how has the new environment reflected on her well-being or state of mind?
I'll be making that same decision for my wife in the future, hence the before, during and after questions. We've already been through the ER 3 times, inpatient skilled therapy, and 2 years of out patient therapy. And now, in the burnout stage at home.
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I find the comments by LakeErie and ventingisback quite insulting. How were the two of you trying to help? You both imply that although Joe found love late in life that he shouldn’t have married her because she might get sick? He says he didn’t see it coming- who does. Illnesses are not planned out in advance. She might have lived to 104. I was married to my wife for 52 years and I didn’t see it coming either. Is there a particular age when the chance of getting sick out ways a couples need for companionship?
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My wife has Alzheimer’s. She was diagnosed in September 2020. I kept her st home and took care of her. As she worsened I was concerned about leaving her at home by herself even with cameras and an alarm system to alert me if she tried to leave. I tried bringing in care givers but she would not allow them to stay. Finally in January of 2023 I moved her to memory care. I work or run errands in the morning and spend afternoons with her. She gets angry when I tell her I am leaving, so often I stay until she falls asleep. It was and is a difficult decision. I believe that she is better taken care of because of the 24 hour care.
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MJWmsEMT Apr 2023
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Ask her PCP if he can call the Neurologist and ask if they could get her in sooner. I like the ER idea.

You are not the only husband caring for a wife on this forum. Hopefully they will chime in. Sorry to say, its woman who are considered Caregivers. There are a lot ofwomen on this forum caring for Mother-in-laws because the husbands feel its their responsibility.
Brothers thinking sisters should do the caring.

Caring for someone alone is a 24/7 job. Your wifes care will go beyond what you can do. Thats OK. So your contact an Elder Lawyer to split your assets. Wifes split going towards her care in a Long-term care facility. If you have no assets just SS and pensions then you go right into applying for Medicaid. Once ur wife is placed, you remain in the home, have a car and enough or all of the monthly income to live on.
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