Where are the husband carers?: I often read... - Cure Parkinson's

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Where are the husband carers?

Dap1948 profile image
Dap1948

I often read posts from wives regarding their husbands with Parkinson’s but can’t remember ever seeing a post from a husband about his wife with PD. I know for one, my husband takes no interest in my Parkinson’s, hasn’t the foggiest how I’m handling it, what problems I have, what meds and supplements I take! I’m not complaining. I’d hate someone telling me what to do, to try etc. You’re far more motivated to try something when it’s your idea. But where are you husband carers? Surely it’s not a gender issue, with the woman being the home maker, mothering figure. Hospitals are full of male nurses nowadays. Come on men, tell me I’m wrong...

74 Replies

There are some here, Caseyinsights is one and there are definitely others. My husband is very involved with my journey and care for which I am very grateful and lucky.

Dap1948 profile image
Dap1948 in reply to Juliegrace

Jolly good 👍

pdpatient profile image
pdpatient in reply to Juliegrace

Not to forget about @ddmagee who takes care of his wife with worse comorbidities than he does. If there are couples in worse pain, I don't know who is.

RKM

I have PD, my wife doesn't. At every appointment I go into a fugue state and forget everything that was said. My wife remembers everything. In a few days she has to have two heart valves replaced. I'm hoping she'll deal with it better than I deal with PD.

Dap1948 profile image
Dap1948 in reply to kaypeeoh

Good luck to you both. You could always record your consultation. Tell your consultant that you’re going to do it. I’ve been told they act better if they’re being recorded, though I’ve found my current consultants good anyway.

Physio70 profile image
Physio70 in reply to kaypeeoh

🙏 best thoughts to you both

the incidence of PD is higher in men than women. I facilitate a Support Group for PD Caregivers. I have only one husband who attends and he is a great caregiver. The rest are wives or significant others. Men and women think very differently. Men are task oriented. They only see one thing at a time. Women are goal oriented. We see the big picture and plan how to get from A-Z.

My husband is the same. No interest and I doubt he knows my neurologists name or my medications. Occasionally he mentions how Pd has changed me for the worse! He’s lucky I’m too apathetic to leave him.

Art_lover45 profile image
Art_lover45 in reply to Astra7

Leave him I'd shoot him!

Astra7 profile image
Astra7 in reply to Art_lover45

First need a gun.....Second, hunting accident.......

(Kangaroos!)

LindaP50 profile image
LindaP50 in reply to Astra7

Sorry to hear this Astra7. Some people can be clueless on how to care for others. You have US !!!

FawnLily profile image
FawnLily in reply to LindaP50

My long term live-in boyfriend is the same way. He does cook and clean much of the time but has no interest in knowing anything about my PD. And sometimes he just selfishly retreats to the basement for days at a time (sometimes over a week) for his alone time.

As Juliegrace points out I am one husband who is a caregiver.

My wife can identify her Sinemet tablets and DopaBoost capsules but takes no interest in the supplements she takes. I put the pills in her pill box and she more or less takes them on schedule.

And I am not complaining about the lack of interest as it allows for a lot of experimentation. I vary the items in the pill box based on her energy levels, her moods, and what ails her. If something consistently works I know it is not a placebo effect, because she has no idea what she is taking.

Yes some arrangements are quite strange 😧

Good on you! Hurray for a male carer.

Yes, my husband is the same. Uninterested but happy to trust me to try things. I think sometimes I can tell how he feels better than he can. To his mind he always feels the same, sick. But I can see definite differences depending on what we do.

"Where are the husband carers?" I think a large part of the answer is in the demographics of PD.

In most countries:

1 the prevalence of PD is higher in men than women, approx 3:2.

2. men tend to marry at a later age, the UK age gap is 1.9 years (source Wikipedia).

3. men die younger than women, 4 years younger on average in the UK (source publichealthmatters.blog.go...)

Note: these factors are not strictly speaking additive. For instance, some of the increased PD prevalence in men is reflected in their lower life expectancy.

My wife 73 has had Parkinsons for 19 years and has been very caregiver dependent for the last 11 years. Since you asked, there has not been one day (except hospital stays) during those last 11 that I have not been by her side every step of the way. She is still my best friend.

Astra7 profile image
Astra7 in reply to 104L

She is very lucky.

gwendolinej profile image
gwendolinej in reply to Astra7

Astra, if you suffer from apathy, have you tried mannitol, which had an amazing effect on my husband. The infrared light coronet and Thermapad have also had great results for some, including Zella23…see her post, and mine on mannitol. We have just started using the coronet and I’ve ordered a Thermapad today from Wellred in Tasmania.

Astra7 profile image
Astra7 in reply to gwendolinej

I do take mannitol and I think it helps, but it gives me awful gas so I only take 1/2 tsp a day.I think it stops me stumbling over words and I feel brighter.

Maybe I need more probiotics.

gwendolinej profile image
gwendolinej in reply to Astra7

My husband takes a medication for the gas. He was on Omeprazole before PD. I image it might have had something to do with the amount of wine he drank😆So I reintroduced it when he started on the mannitol.

Gwendoline

faridaro profile image
faridaro in reply to Astra7

Enzyme Alpha-Galactosidase can be helpful:pubmed.ncbi.nlm.nih.gov/171...

I like Enzymedica BeanAssist which contains it.

alaynedellow profile image
alaynedellow in reply to 104L

Beautiful. A true friend

Dap1948 profile image
Dap1948 in reply to 104L

Lovely. She is very lucky

NRyan profile image
NRyan in reply to 104L

Thank you for truly loving her. You are rare.

Kmoore464 profile image
Kmoore464 in reply to NRyan

Very true. I’m jealous

LindaP50 profile image
LindaP50 in reply to 104L

Bless you!

Can I give a shout out for the many of us who manage alone as we don’t have any choice. Widowed or single, we live with the fear of not coping but we do because we have to. Sometimes it actually makes us stronger as we don’t have any choice. I dread the day that changes and my heart goes out to those in a similar position.

Dap1948 profile image
Dap1948 in reply to Sarahlil

Yes my heart goes out to you all. 🥰

BootsOn profile image
BootsOn in reply to Sarahlil

Sarahlil Hear hear! I sometimes feel invisible.

ssrs profile image
ssrs in reply to Sarahlil

When my husband got so bad this past December before he started on Sinemet, we said the same thing about having Parkinson’s and living alone. I can’t imagine dealing with it by yourself.

pdpatient profile image
pdpatient in reply to Sarahlil

@sarahill, we do need to be aware of and cognizant of the challenges that PwP's like you (I presume that you alluded to your self & I apologize if you didn't), face on a day to day basis. Parkinson's is a cruel disease, but it doesn't have to be. We are all in this fight together and I will pray for every one of us that we will ultimately emerge triumphiant.

RKM

Sarahlil profile image
Sarahlil in reply to pdpatient

Thank you pdpatient. We travel this pd road together but very much as individuals. Compared to many, I have nothing to complain about and much for which to be thankful. Every day brings its own challenges but overcoming them can be cathartic. We have to be hopeful - just reading this forum we find many reasons for optimism. It is not always possible to shut out fear nor to eliminate stress but it is worth recognising that negative emotions only make us feel worse. There is a battle to be won but, as you say, we shall be triumphant - a wonderful word that conjures up images of celebration and trumpeters bringing down the walls of Jericho! Here’s to hope over despair. Sarah

I met two English couples at the Parkinson’s therapy centre in Italy a few years back where the wife was the PwP. Both husbands impressed me as loving and thoughtful care-givers.

Dap1948 profile image
Dap1948 in reply to Skydome

I wonder if their upbringing has a big effect. My husband doesn’t know how to care. When I was beside myself with grief when my mother died quite suddenly, my husband patted me on the head. I was told by his first wife that when he was young his mother had treated him like an accessory.

Skydome profile image
Skydome in reply to Dap1948

Upbringing is definitely a key factor. As children we look to our parents for love, and when they are incapable of showing it, we accept that ‘s what love must be like. A friend of mine had exactly the same experience as you when her mother died, and my friend said to me, ‘All I wanted him to do is to put his arms around me...’ .

Dap1948 profile image
Dap1948 in reply to Skydome

Yes me too. If I try and hug him he freezes! Somehow we managed to produce a child! And she loves hugging!

In answer to the question I have got a good one! His first experience of PD was 45 years ago with my father needing help to poo and he was the only one awake. My father died in 1977 at the age of 71 and had had this filthy disease for over 30 years and when I was sobbing at the diagnosis thrown so casually at me by a German GP - famed for her diagnostic abilities but unfortunately with a lousy bedside manner, E's response was "Well we had to reckon with it being hereditary - just think about your dad!" I often think "He did not sign up for this but of course he thinks he did and I have been there through 40 years of his heart disease and now in out twilight of our lives we can laugh about it and start every day with "I've done a poo!!!!!!!!!!" He puts out my first meds of the day - Lansoprazol for my acid reflux, B12 just in case and Dopamne - he himself is B12 deficient and my lovely mum died at 98 with pernicious anaemia and even in the nursing home they had not spotted it . So. The sainted Ernie as he is known among our acquaintance does all the laundry and hoovers and washes the wooden floors washes and blow dries my hair during lockdown and shops and cooks all the food. He tolerates my spending a fortune on B12 and other supplements but takes no interest in what they are or where they come from. Tea and biscuits in bed every morning and when he can force me to go out for a walk or shopping or whatever, he always holds my hand. Plus every morning he prepares two bowls of fresh fruit which we have after dinner - and yes we are once again back to poo - they really do help.Ernie, I salute you - you are my rock

Sorry to have to finish on this note but I titrated my B1 up to 3 x 500 mgs a day and I now have painful swollen feet so if anyone has the answer please let me know. I am taking a fortnight off and I was so excited that I might have found the answer. I never thought I would be the failure! Just when I had got my joi de vivre back!!!

Dap1948 profile image
Dap1948 in reply to Art_lover45

If you felt better on the B1 and worse at that dose, go back to the lower dose! Good luck

My father was the caregiver many years ago for my mother. He was an engineer by trade so was excellent at reading up about PD and diabetes from which she suffered. All meds and doses were listed, blood tested at set times and my mother couldn’t have managed without him. He even learnt to cook and care for her which wasn’t his daily routine before PD. I do feel for all of those who handle it on your own it must be so difficult. PD is such an uncompromising condition which I see first hand with my husband.

If I was the other way round I’m not sure he would do what I do even though he is very caring and loyal. He’s just different.

He was amazing when I just had my 2 nd knee replacement, looked after me but it did wear him out! Luckily 7 weeks down the line so mostly thing have got back to normal!

The response I received from my significant other of 15 years after telling him I had the diagnosis was "we should break up". It has taken me 4 years and a pandemic to put aside the fear of living with PD alone and leave him. I am moving out August 1 and I have never felt such relief. I have found that living with the lack of interest/effort/love from a partner is worse than any symptom of PD. I may suffer alone, but at least I won't suffer while an uncaring person looks right through me. I have faith in myself and the divine that this is my journey and it will work out. My heart goes out to all the women who do not have the support you truly deserve. Big hugs!

Juliegrace profile image
Juliegrace in reply to NRyan

A very wise person (I can’t remember who) once said, “it’s better to be lonely and alone than lonely and married.”

Kmoore464 profile image
Kmoore464 in reply to Juliegrace

Definitely

LindaP50 profile image
LindaP50 in reply to NRyan

Hugs right back at you. You'll see how strong you are by making this move and leaving an uncaring person. Hard but better for you in the long run as you already know by the relief you are feeling having made the tough decision.

Good luck to you. Keep the faith, you are strong.

Dap1948 profile image
Dap1948 in reply to NRyan

Good luck in taking your next step. Making the decision is the hardest step.

Sarahlil profile image
Sarahlil in reply to NRyan

A lot of people will be thinking about you on August 1 and wishing you well. You are a strong person and you will learn to rely on yourself as so many of us have. Reach out to your friends on this forum if you need moral support. We are here for you. Good luck and big hugs to you too.

Astra7 profile image
Astra7 in reply to NRyan

Good on you. That takes a lot of strength. A brighter future awaits.

I'm still early in my PD at 5 years, but my husband is a wonder. When COVID started, he said, "I'm taking over the shopping because we don't want you to get it." He now does all the grocery shopping, cooking, and clean-up. He says, "I want you to save your energy for the important things, like spending time with the grandkids."

NRyan profile image
NRyan in reply to SonarsMom

Yes, there are good men that care for their partners. I won't find out unless I leave this one. Treasure every moment with your man, love like that is rare.

My partner is always looking out for me and has taken on more household chores over the six years since my diagnosis but for now PD is still mild. Fortunately we both are homebodies. I’ve thought about the future but try not to dwell in it.

I would have done anything for my wife but she left me when diagnosed with PD....

NRyan profile image
NRyan in reply to beehive23

I'm so sorry that happened to you. You are not alone. Big hugs!!! We will move on one day at a time.

My wife has PD I take care of her as she would care for me. I do all the housework we work together looking for help to manger her PD meds and whatever. I speak for myself any marriage that finds the partner missing when needed needs repair.

My wife has PD I take care of her as she would me. I do all the house work and together we look for ways to manger. A marriage that finds the partner missing when needed needs repair.

Lets see if I can say this without getting booted.

There is a reason why when you go into hospital that most of the nurses are female. It may be associated with the need to nurture and mother , but for whatever reason they are very good at it and they are happy doing it. I have met a few male nurses , and they were every bit as involved and good at the job but call it coincidence , they were all gay. Which to me makes perfect sense. Men are not jerks and they are not nurses.

Most men do not have training or attitude or aptitude or desire to be a nurse and most men given the choice of :

Being a nurse to their mother or wife or father

or paying for someone else to do it

will instantly and instinctively pick up, their wallet

If you are not getting sufficient support from your son or husband , hire a nurse or move into a nursing home, of your choice and meet new friends. Look after yourself . If the rest of the world does not like it, who cares.

I have been very fortunate. My husband of 39 years has always been a very good caregiver. I watched him help with his mother and with both of my parents . He brought tears to my eyes one day I walked into my mothers hospital room and he was there on his lunch hour, and he was cleaning my mother. Not very many men would do that for their own mother let alone their mother in law. My heart was about to burst. He has always been my rock with our son fighting cancer and then myself with cancer and know with my PD. We have always been the kind of people that don’t dwell on our challenges and push forward. With that being said , the last few years have been difficult. My husband had some career issues with a company that he’d been with for over 40 years and turned to alcohol . This time last year I became aware that the love of my life was having an affair. Never saw that coming and I confronted and is no longer. But my heart will never be the same. I know he loves me and not sure what he was looking for and this person has moved on to someone else in a snap. So my husband realized what a fool he was but I told myself I would never let someone make me feel that bad about myself and what I turned into when I found out. I do have one of the good men but none of us are perfect. Karen

pdpatient profile image
pdpatient in reply to Kwinholt

Karen, your story is very moving. I thought I had it bad with both diabetes and Parkinson's! Did not know that you're a cancer survivor. As for your husband, I feel sorry for him and bad for you. He was doing all the right things and suddenly one day he encounters alcohol in all its fine glory and ends up destroying the say sacred trust between a married couple.

I say this because you appeared to have zeroed in on alcohol as the trigger factor or in fact, facilitator. I just wanted to tell you that you are not alone in this assessment. Very good men and women have fallen prey to the millenia old curse of alcoholism and the aftermath. I have a very close friendship with a person related to my wife. This friend of mine "discovered" one fine day that his wife had been having an affair. She had become an alcoholic awhile ago. They were about to get divorced and the only thing that is stopping that from happening is their two young teenage kids and his firm belief that minus the alcohol, his wife is a great /good person.

There is something about alcohol that seems to take away our defenses, makes us vulnerable to being preyed upon by others and ultimately being forgiven for all our sins.

I heard the pain in your "voice" and thought I would chime in. Did not mean to hijack this thread that @dap1948 started 🙂

You seem to be handling your life pretty well considering, and I wish you all the best.

RKM

Kwinholt profile image
Kwinholt in reply to pdpatient

Pd, Thank you very much for your kind words of support . We all have a story , some with demons and baggage, some not. But I do believe that some of my husbands choices would have not happened had alcohol not been involved. Don’t get me wrong we both have had a great time partying over the years but I’ve found rather early in my PD that my meds and alcohol don’t work together. I don’t drink at all. And being a ultra runner too , I choose good things to fuel my body. Take care. Karen

My husband has NO intention of being my caregiver, of doing anything to make life easier. He’s told me so. Nothing new, he’s always thought the world revolves around him.

The problem with PD is that the symptoms vary so much. Non motor symptoms are often more difficult to manage. My husband’s main symptom has been apathy, from the very beginning. So he’s happy for me to be in charge. He improved with the Neupro patch. When that stopped working, mannitol worked wonders in many areas, including apathy. So we just keep trying things, thanks to the wonderful people on this site. It’s an interesting conversation you’ve started. We never stop learning. Thank you.

I have to say, my husband is an exception to your ‘rule.’ He is totally involved in my PD journey. Not only has he voluntarily taken over many of the household duties that he knows are difficult for me (cooking, vacuuming, errands ...), he understands the disease and treatment as well as I do. He goes with me to all my doctor visits and he makes sure every day that I know that he loves me. We’re going on 50 years married next anniversary and he’s really lived up to the “for better or worse” and “in sickness and in health” clauses in our marital “contract”! He’s definitely a keeper!

MY HUSBAND IS A GREAT CAREGIVER. HE DRIVES ME TO APPTS, A ND W ILL DRIVE ME TO SOCIAL EVENTS WHEN WE CAN FIND SOME. HE NOTICES THINGS THAT I DONT REALIZE, AND LISTENS TO MY CONCERNS AND FEELINGS. HE OFFERS POSITIVE WAYS OF THINKING ABOUT MY SITUATION, WHEN I LOSE SIGHT OF THEM. HE KEEPS ON WITH HIS OWN GOALS AND PERSONAL PROJECTS AND DOESNT TRY TO TELL ME WHAT TO DO.

When I learn about some of these awful relationships that people are involved in I wonder what responsibility lies with the aggrieved party for picking a bad partner in the first place. People don’t change that much over their lifetimes. If someone is an idiot in your relationship, they were probably an idiot when you were dating, and you were probably an idiot for choosing them.

My husband is the most caring, attentive and supportive person. He said when I was diagnosed 9 years ago “well we’ve got Parkinson’s and we’ll deal with it together.” And he’s been amazing. He attends every appointment with me and discusses my condition with my Consultant as I’m often stressed by the time I arrive there. He also checks my meds and ensures that I don’t run out. Apart from that he took over all the cooking when he was concerned watching me cutting an onion and he’s turned into an excellent cook who actually loves his new skill.

How sad that so many men can’t see how difficult life can be as Parkinson’s progresses.

You are so blessed. Hope you know you have a very rare gem. Most men are too self absorbed. It also depends on the condition of the marriage. Love conquers all whereas a struggling marriage will collapse under a PD diagnosis. It’s the straw that breaks the camel’s back

I agree - he’s one in a million and I treasure him every day.

@positivepen, I am happy for you and as @millbrook said here, YES INDEED, you are absolutely blessed.

RKM

I don't know if I qualify. I am 76 and have Parkinson myself. I have a bad heart and type 2 diabetes. I am the 24/7 caregiver to my wife who is a left side paraplegic unable to do any ADL's. "Want to come play in my world?"

Skydome profile image
Skydome in reply to st8farm

You are amazing. Depending on where you live, don’t hesitate to ask for assistance from social services or other available support resources. It’s important that you get respite from caring for your wife in order not to jeopardise your own health.

Millbrook profile image
Millbrook in reply to Skydome

Yes. You must care for yourself as well

Millbrook profile image
Millbrook in reply to st8farm

God bless you over and over again. May God be the strength of your heart and your portion.

Millbrook profile image
Millbrook in reply to st8farm

If you would like to improve your type 2 diabetes look up dr Jason Fung on YouTube . He is an amazing doctor who has helped many reverse diabetes through fasting and diet management

I was the caregiver for my late wife (cancer) until hospice. Although men may be less apt to be involved in their wife's care, some are. Also, I invested much of my time in research both in traditional and alternative treatments. If she would have followed the traditional treatment, her expected lifespan maximum was 6 to 12 to 18 months. Aggressive and alternative treatments made her at 2 1/2 years one of the few long-term survivors. She lived 3 1/2 years and was one of a very tiny number to reach that milestone.

She was blessed to have you!💕

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