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.
He was highly recommended and then sat back and went to sleep: totally disinterested as there is no benefit to treating someone with an incurable disease. I repeatedly asked him for a letter describing my husband's Alzheimer's, but he never responded, then I asked my husband's Primary doctor to get something in writing from the neurologist and that never happened: my husband believes the diagnosis in not real.
Appointments will be set this week for a brain MRI and a Zoom meeting with the Geriatric Psychiatrist. I cannot fix my husband, but I surely can advocate for him.
It makes me wonder OP, what you did with your parents when they reached old age. Please don't tell me you dumped all the problems on your sister (if you have a sister).
You could test your wife first, by using the F.A.S.T. test for a stroke (or F.A.S.T.E.R.): Stroke Symptoms: From FAST to FASTER.
https://www.beaumont.org/health-wellness/blogs/stroke-symptoms-from-fast-to-faster
If she fails a few of those tests, you could tell the 911 operator she is having signs of a stroke as well as the symptoms she has been having and they have gotten more widespread. She won't be eligible for TPA, a drug given within 3 hours of stroke symptoms, but she can get a CT in the ER and hopefully a diagnosis and treatment plan once she's in the hospital.
If the ER or inpatient visit determines she could be treated at home, Medicare Part A does pay for home health care: https://www.medicare.gov/what-medicare-covers. ;But it requires a doctor's visit by your wife and that doctor's referral to the home health care agency. My wife has been bedbound for two years and I finally convinced her doctor (Internal Med.) to refer her using a virtual telephone visit with me (also covered by Medicare). I am her Power of Attorney for Health care and for property, but you may not need that. It's worth a try if there's any way you can keep caring for her at home. Home Health would come to your home for a visit to determine whether the care they provide could improve her condition. An ER visit first seems essential to me as a first step, given your situation. Best wishes to both of you!
You ask how much is expected of you. That's a tricky question. I would ask what you would expect of your wife if the tables were turned - as a starting point. What would you have expected of her if you had been injured and needed her to be your caregiver permanently? Maybe that is an unfair question because the tables are not turned, but I often try to put myself in the other person's shoes when I'm trying to figure out how to handle a situation.
And then the second thing I would think about is how much you personally are able to handle. Once you have a diagnosis you will be able to better understand what you are working with and make a plan for the future.
For the record - there is literally zero shame in needing to find help - whether that be respite care in your home to give you time off - all the way to needing to find a permanent placement for her if you believe her care is just more than can be done at home. There is no right or wrong answer - that is very personal.
You ask about husbands caregiving for their wives. I think you may find that we are a community of caregivers in many different scenarios with a ton of experience - so while the specific scenario you describe may be helpful - I wouldn't rule out listening in on other conversations. At the end of the day - caregiving is caregiving. And a lot of people may be going through very similar situations - just not with the same exact relationship.
Good luck! I wish you the best!
We got married when he was 50, and got sick less than decade ago. This man was the healthiest most active and energetic person, who was hockey coach, skied, ran marathons, exercised two hours daily, we were hiking for hours, we travelled the world, to this day drs are astounded at his physical exams as he has all vitals better than most 30 year old. So how the h*ll he got Parkinson and why? Why him? Why not him, people get sick. I admit I am angry sometimes at this senseless, cruel disease, but I am accepting it, most of the times.
There is some resentment, or I feel sorry equally for him and for me. Chances are other diseases could become more dangerous, or his motor skills will diminished or dementia show up. I know there are arrangements thru third party for facility placement.
And as I am feeling full of energy and want to do many things he with diminishing motor skills will not be able to, Parkinson is progressive and gets worse slowly, I want to resume some serious travel, he cannot.
I know I will do it alone as he does not have any problem with going to facility.
So chances are with Parkinson, your wife and you will have to face some adjustments as most do. You need to start with realizing you cannot do it alone, get respite even few hours a week. And find places so you can meet people, make friends.
Does your wife have any children/family? If they don't live close, they won't be able to help with daily care but they might have some good suggestions about finding doctors or getting you some help with the wife's ADLs.
I will try some more research and get back to you if I find something interesting. Wishing you strength and luck on this journey.
I can empathize with you. I facilitate a virtual support group that's only for Men that are caring for their spouse/partner. We meet virtually the 3rd Thursday of every month, at 4:00PM Eastern Time. Parkinson's comes under the Dementia umbrella. You can call to register for the group. It's FREE.
Michael
Presented by:
Alzheimer’s Association
Delaware ValleyChapter
MEN ONLY - Caregivers for Spouses /
Partners
3RD THURSDAY of the Month | 4:00 - 5:30p.m. Eastern Time
January 19 | February 16 | March 16 | April 20 |
May 18 | June 15 | July 20
Registration is required. Call the Alzheimer's
Association 24/7
Visit alz.org/crf to learn more about caregiver
programs and resources. To further extend
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Build a support system with peo
You might check with some other neuro drs to see if they have any earlier appointments and (if needed) tell her doctor to complete the referral to another doctor that will see you sooner. Or, if you have some medical event, get her to a hospital ER that will have a neuro doctor that sees her and does the evaluation you need.
Your income and assets would be used to determine if she is eligible for any kind of Medicaid program via in-home health. (Yes, there are times you get Medicare or insurance and still qualify for in-home Medicaid programs). Very limited hours to help her, however any help is better than no help. Did her previous doctor mention hospice? If so, you might want to talk to a hospice agency in your area to determine what kind of help they can provide.
I would talk to the family, even though 3 hrs away, and get their thoughts on the matter.
Also, what is expected of you is what you expect. If your going to quote your vows then what did you say in your vows? "In sickness and in health, to love and to cherish,"? I read that as -- do as best as you can if you cannot give her the assistance she needs you need to find someone that can. You love her and just because you physically cannot do the chore does not mean you are not allowed to find someone that can help you with it. Also if you need to place her in a facility for assistance you are not - not caring for her in sickness you are making choices for her in her best interest as you see fit. Prayers for you and yours!
As for your wife, go to another doctor. You need that prognosis fast. If she really has Parkinsons, I've heard that exercise will help. However, as fast as the symptoms are progressing, I'm wondering if it is something else. You could also go to ER (not Urgent Care), and request a diagnosis.
Keep a daily diary of her health. Something like that will be therapeutic for you, and can be used as a reference for discussing her issues with a doctor.
https://www.continuingcarecommunities.org/assisted-living/georgia/perry.html
Also, regarding your question OP, there's NO difference between husbands taking care of wives, or wives taking care of husbands.
You're a man? In a way, so what. Millions of women take care of their husbands. Your gender doesn't matter.
Her memory is gone? That doesn't happen suddenly. It takes time to get to that point.
How is it possible you haven't reached out to more doctors, concerning all her health troubles. Where there's a will, there's a way - it's not impossible to get a hold of a new doctor, in all this time you've been with her. There is medicine that can GREATLY help against Parkinson's (trembling, resulting in bad mobility...).
You married her 6 years ago. Why did you marry her? Was she already sick at the time?
It's admirable you want to honor your wedding vows; what is 'expected' of you is just to ensure your wife is safe and in an environment where she gets the care she needs. Advancing age, and life in general no matter the age, throws us 'curveballs' that challenge us. Nobody 'sees it coming' in a specific way but life brings these challenges and our task is to Find A Way. Sending you wishes for strength and courage, for your wife and you.
The best thing you can do for your wife is to be her ADVOCATE at all times. If her doctor is not up to par in your opinion, get a new doctor for her. Touch base with state/county office of the aging, and county dept. of social services for guidance on Medicaid. Ask many questions. I know it is stressful, but this is your wife. You want the best for her. I wish you all the best.
You said you have a great deal of respect for any man that takes on the role of caregiver. Why not just any PERSON who takes on the role of caregiver? As a woman I have a great deal of respect for ANYONE who takes on the role of caregiver simply because it is a huge responsibility for anyone. But your statement is not unusual at all. As a society we tend to associate women as caregivers - men as providers. In fact, in a lot of situations - if a man and his wife end up taking in HIS mother or father, HIS wife almost universally ends up taking on caregiving responsibilities by default.
So I am genuinely curious why men tend to get so much more attention and applause when they take on the role? I mean I could see it 25 years ago even. But now I would think we would be moving out of that stereotype. You see a dad out with his kids - people lose their minds - what an AMAZING DAD spending time with his kids! You see a mom out with her kids - well you see a mom out with her kids. You see a dad out with his kids and they are misbehaving - lord the number of women that will come out of the woodwork to offer this amazing dad assistance with their errant little one because Dad is going above and beyond. You see mom out with her child that is misbehaving - well shame on her why can't she control her child?
The same transfers to caregivers. Women seem to be the automatic default caregiver for elderly parents or other loved ones- whether they are theirs or not. When a man is doing the caregiving - everyone reacts as if they should be given a medal for bravery and heroism. But when a woman is a caregiver - she's just doing what she should do.
When are we going to normalize that men as just as capable of being nurturers as women? And should be expected to take care of their own kids the same was as mothers. And if they agree to take care of their own parents, then THEY agree to it, they aren't committing their wife to it just because she is female.
We need to stop worrying about gender roles and norms and just remember that being a caregiver is hard on ANYONE and have respect for each other period. It is no more difficult for a man to be a caregiver than a woman. It is not more stressful for a man than it is a woman. It is just stressful being a caregiver period.
When I read posts here - I never assume a poster is male or female unless they state it. I assume they are a caregiver. I don't even assume a poster is female when they say "My husband" unless they explicitly say that they are female. The post title "what about husbands that are full time caregivers for their wives?" I get that there may be some nuances that are different with certain things that he may have to do for her than a woman for her husband. But honestly - beyond that - caregiving is caregiving.
I would love for someone to explain to me how it is so different for men to be caregivers - I'm not being catty - I'm genuinely trying to wrap my head around why we make such a big distinction.
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.
I know this from experience my brother in law had dementia where he was letting go of everything the body does all over. My sister in law who was his rep payee and took care of him did the ER DUMP with him. It got him into a nursing home faster than she could do. She was trying to get him in but no results until the ER DUMP. The doctor there told her they aren't a babysitter so you could go out and eat. But it worked they admitted him to the hospital and found a nursing home within 2 days that would take him. Before she was trying for 2 months.
Prayers
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.
My husband has Parkinson or at least he was diagnosed about 7 years ago. Probably started 2-3 years.
Let just assume he has it for close to 10 years and he is not as bad as your wife.
For first 5 years there was almost nothing, he took his meds and everything was under control. Generally, PD is very slow progression for most people.
Now, it is very fast, however, he hardly has tremors, no dementia whatsoever, and mostly independent, I spend very little time helping him, he does not need reminders about meds etc. His motor skills are diminishing and levodopa is not helping as much. He is having more falls and choking episodes and now it is advanced stage. But, totally agreeable, not needy, super involved in many intellectual pursuits.
You need to realize if it is PD there is no cure and many people live 20 years with it, they don’t die of it. So you and I and others need to create our own lives, as important as it is to provide quality of life for spouses, because it is long progressive disease and you need to take care of yourself as much as you are caring for your wife.
I have support and many great long time friends, I do not involve them with disease, talk about it, or don’t ask for help, they offer and sometimes I accept, like one friend help with taking my car for checkup, another went to appointment with my husband, but, mostly it is fun, going for lunch, or dinner, I invite them back, as social life is important.
I get respite, spend half a day or more on my own interests, sadly we took a trip recently and I know there is no more travelling together, and it was our shared passion, it is time to do it myself. And for now as I know other conditions or diseases potentially dangerous come to the mix, I had to accept what is happening.
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.
Thank you
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.
Next, is someone her DPoA? If not, this needs to happen so that if you ever need to transition her into a facility, you have the legal ability to do this even if she doesn't want to. If she has adult children from a prior marrriage who are willing to be back-up PoAs, this would be a wise thing.
Then, once an accurate diagnosis is established, consider talking to a Medicaid Planner for your state of residence. Most states Medicaid programs only cover LTC and most have a 5-year "look back" on the financial portion of the app. Therefore, you need to manage her finances in a way that doesn't delay or disqualify her from this program.
You can call social services for yoour county to see if she qualifies for some in-home help. Also call your local Area Agency on Aging for more information and resources.
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.
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.