Husbands as caregivers

Arrowhead

I swap emails with another man whose wife also has Alzheimer’s. Here is part of one of the emails that I sent to him.

One of the things that makes it more difficult for us to be caregivers for our wives is the fact that we are men. We’re men, we fix things, that’s what men do. When something is broken, we fix it. Alzheimer’s is something that we just cannot fix and that makes caregiving harder on us. Generally, we are not the nurturing type, but nurturing is thrust upon us. Being not in our nature makes it harder for us to learn how to do it, yet that is what we must learn. This disease takes us far outside our comfort zone. 

Below is his response. 

You are absolutely correct in that nurturing and caring for someone is alien to men in general. I always saw myself as responsible for providing, fixing, handling the business end of marriage, but never being a caretaker. It is a new role and I struggle to adjust. I know the disease is what makes her do or not do things, and I know I should not get pissed at (her), but I am finally admitting to myself I am stressed and would rather be managing a factory full of employees than a caretaker for one. 

tgeno

I agree that it is probably tougher for men. I consider myself fortunate in having my father as a role model who cared for my mother from her diagnosis until her death for advanced Alzheimer's, a period of about 7 years. I also am fortunate to have a sister who is a hospice nurse and who was a big help to our father in caring for our mother.

My wife was recently diagnosed with early stage AZ, so I have no illusions about what is to come. I am now trying to channel my father (who has since died from heart disease) and learn from his example in now caring for my wife.

Scooterr

Arrowhead, I totally agree, for me as a  husband to my wife one of  the main obstacles I had to adjust to was not being able to fix the problem, (her disease). Like you it's a hard adjustment, stressful, and there's days my patient are gone. I've learned a lot about acceptance and to expect the unexpected on a minute to minute basis. There are those days acceptance is hard to swallow and the caregiving is pushed to the limits.  It's hard for a man not to be able to fix something that's unfixable. Like you I would bother be working, but I chose to put my wife front and center and I can live with that.

Ed1937

Good topic, Arrowhead. I'm not sure if gender makes a difference when it comes to the difficulties of caregiving. Men have traditionally been thought of as fixers and providers. Women were responsible for taking care of the house and kids. But I think both sides are stuck having to learn how to do things they never did. I had to learn how to cook a little, and do other things that I didn't do. I sure miss her cooking. But most women would have no idea what to do with an electrical problem, other than call for service. They typically wouldn't know how to replace a hot water heater, change brake pads, or maybe even know how to change a tire. 

My wife knew a lot more about certain things than I did, but her mechanical abilities were pretty much limited to changing a light bulb. Even though she was an RN, I'm pretty sure being a caregiver would be just as hard for her as it was me.

Just Bill

Arrowhead you guys are 100% correct. We can build rockets but zero bedside manner. Like everything else if it is learnable we can learn it. So now we are nurturers with great bedside manner. At least works in progress I am still stumbling while I learn.

Langlo

As a caregiver for my wife I not only have to live with her condition but also my sometimes very inappropriate responses to her behavior!

ghphotog

Well said, I've never thought about it that way but it's sooo very true.
I'm a troubleshooter and fixer. In my wildest dreams I never thought I would be here, where I'm at today as a caregiver for my mom and wife. My DW is deep into it and is in constant need of physical and emotional support, all day, every day. So very hard for me but the man in me sees a job I have to do and even though I hate it so very much, I do it because it's my "job" right now and nobody's going to do it for me.
They don't understand why sometimes I've lost all my patience. When I've done all I can do that day, there is no satisfaction for a job well done. Just a continuation of the same without gratitude, without attaboys, just an endless slog day in and day out that seems will never end until my body gives out. 
I can't fix my wife's health but I try to fix her broken emotions every single day, all day, and because it takes 100% of my time from when my wife gets me up at 4am to help her potty 5 times in two hours until we go to bed at night, which leaves nothing left for my mother. My mom is just a side job if you will and pretty much an after thought even though she lives with us. Trying to multitask this is impossible and frustrating to no end.

ladyzetta

All of you men amaze me, how wonderful you have been and are still taking care of your wife. I did the best I could for my DH but I knew when I needed help. All of you show how much love goes into the care you give your wife. I am not sure if it was me if my DH could have done what all of you are doing. You're right the men are here to fix things and that is just what you're all doing. 

Caring comes naturally to most women, again you gentlemen totally amaze me. Please take good care of yourselves. Hugs Zetta 

Langlo

Hating the job of caregiver and sometimes losing your patience are, from my own personal experience, completely understandable. While my circumstances and moods change throughout the day, I can relate totally.

Rennbird

We hear about unconditional love and caregivers are called to this impossible task.  Our spouses can rarely if ever give back to us.  I think people have different ways of coping with this type of experience.  I chose to see and believe in the religious symbolism.  I was  walking the Via Delarosa and at the same time, I was standing at the foot of the Cross.  The struggle took on a new meaning based on what I had learned thru my religion, but I am sure that all religions promotes something similar.

mommafour

A couple of years ago, after suffering a traumatic injury, I learned what a great caregiver my DH could be when he had to assume complete care for me in most areas of daily living for several months. In our 30 years of marriage, I had never thought of him in this role. I was worried that he would be stressed and overwhelmed but he did the best he could and never complained. Due to his Alzheimer's status at that time, it took a lot of detailed instructions on my part but we got through it as a team. When I lose patience and feel bitter about his current status (which I admit is often), I need to remind myself that I'm giving back to him. Of course, there is no "teamwork" in our current situation and more recently, I am the one who is stressed and overwhelmed. In reading the posts of the men on this board, it seems you are all doing a great job of providing loving care.

danapuppy

I guess I have to chime in, at last. My first post, sorry I've been a sideline stalker for a while. I am a struggling husband caregiver/provider. Likely suffering from obsessive compulsive tendencies, too.

You guys know what losing your life partner is. We shared our lives, our tasks in the home, our friendships, and our family. I ran a business, made the money, planned our adventures, and grilled the steaks. Guy stuff...I don't care if that sounds misogynistic. We are a Christian household, and we believe what the Bible instructs us about marriage and the roles of husbands and wives. It is not patriarchal...it is mutual respect and love of God and each other.

She took care of the home, children and grandchildren. And she was good at it. She even worked part-time in the business that gave her some play funds. But everyone just loved her personality, too. Making people comfortable and feel appreciated was one of her many gifts.

A year before the COVID hit things had been declining in the business. My business partner of 25 years retired. Client attrition was taking its toll. And I began to observe my Honey's memory decline and a precipitous drop in her problem-solving ability. Early onset was the diagnosis.

We were once very active. Without being too immodest she was a passionate lover. We traveled, we boated, we fished, we went diving in amazing destinations. We dined with friends and family. We were active in our church.

We exhausted all of our savings and retirement accounts trying to salvage the business and live during the pandemic. I still have to work to keep the lights on and food on the table. I cook the meals, I do the laundry, I wash the dishes, I walk and feed the dog, I'm the study partner in the research trial. I counsel her mood swings, I answer the regular thousands of questions, over and over. I coordinate when people want to visit.

Travel is too stressful for her. We have not been intimate in over three years. Friends are long gone because they just don't know what to do. Family can be elusive, too. Everyone asks, "Oh how is she doing?" Well, I can't say..."it f'ing sucks. My best friend and partner in life sits in total depression with delusions of how ugly she is and fear of nearly everything." Those who have never experienced dealing with someone with Alz are just trying to be polite, but really have no desire to tread in these waters. So, I just say, "it's progressing,"

It feels like our home is her prison and I'm the warden. I hate the way my frustration spills out at her. She behaves like a petulant child much of the time. She doesn't want to take her medication, she doesn't want to shower, she doesn't want to go to bed, she doesn't like to eat something she has eaten for years, and the list goes on. When I have to go to work, I fear what she does all day sitting alone watching the same TV program over and over. I'm concerned the stress is going to kill me before her...then who will take care of her?

Boy...when you open the gates, watch out for the flood. Sorry for venting.

ghphotog

Dana, you are in an exclusive club and everything you've just described, hate to say it, but almost stereotypical to my life and many others here.  We so understand everything you have said. Watching the same TV shows or series over and over and over again . For me I used the TV as a babysitter while I worked and played golf. Now there's no way I can leave her alone. Just letting you know that we know.

Lgw

Not all women are natural caregivers.  I may have fixed the meals but not once did I ever fix anyone's plate.  He had a very large glass for his tea because I was oblivious to whether it needed to be filled.  I was busy taking care of the kids, no actually teaching them to take care of themselves.  This is foreign to me too.  My least favorite question is " How are you doing?"  What am I supposed to say?  A (cuss word here) nightmare.  I patiently answer what they want to hear. Just fine.  None on us are fine.  We miss our helpmate that we expected to grow old with.  We thought after retirement we would be playing golf.  Before he quit walking I couldn't even interest him into putting in the living room.  Caregiving sounds like a simple loving word.  It falls way short of the actual heart breaking work that we actually do.  Keep up the spirit and pat yourself on the back.  You need it.

danapuppy

Yes, I realize this group is the choir. I'm not saying misery loves company because my prayer is no one should watch the love of their life fade into oblivion. But it is reassuring to have this community.

Marie67

I'm not sure I agree with all the post that seem to think women are more prepared to be caregivers. At least not where this diease is concerned.

I don't think it's easier for a man or a woman on this journey.

Unless you have already experienced this with a LO before.

It's like going in blind. Never in my wildest dreams, would I have thought I'd be in this situation. Talk about a learning experience. 

I think caregivers, whether men or women are pretty much on equal ground with this diease. Each of us just trying to do the best we can.

Rennbird

It’s the pits.  It is impossible and yet somehow we do the best we can with our limited resources.  All we can do is take it one day at a time.  My husband has been dead for three years.  So many lost years, but for whatever reason, life had asked this of me.  Society as a whole has no understanding of the enormity of this calling.  It is difficult on every single level of our lives.  My County wants to spend hundreds of thousands of dollars on a COVID Memorial.  I would rather they use the money for assisted living care for those who cannot afford it.   For those of you who are fixers and problem solvers, there are no answers only small baby steps of learning and coping.  This is why I could only cope through exercising my faith.  

I think my entire jaw has moved out of position because I had to keep biting the bullet.

DJnAZ

Although my wife has been in assisted living/long term care for nine months, I continue as best I can to be her caregiver. I keep trying things that I think may help her. And I push the MC facility to engage her, work with her and stimulate her rather than just warehousing her.

 I know it is unlikely that she will get better. But I want her remaining time on earth to be as comfortable, enjoyable and easy as possible. So I keep trying to fix things. In my case the role of fixer is basically synonymous with caregiver. I suppose I'm her care=fixer.

RickM

I'm another spouse taking care of my wife.  We've been together for 40 years.  I too am struggling, despite my wife who is still a sweetheart, does her best to battle this horrible disease.  I admire all of you spouses, male or female, who care for your partners, most of you seem to have far greater challenges to deal with than I do.  My wife is in a moderate stage and I don't have to deal with behavioral issues for the most part,  no roaming, anxiety, or aggression.  I guess you could say that if there's any fixing to be done it's for me.  Despite doing a significant part of the caregiving for our son when he was young (my wife had the better job and worked full-time while I cut my hours back to part time and stayed home days when our son was young), and despite assisting in setting up care for my mother and being POA for my father, both of whom had Alzheimer's, I am at my wits end caring for my wife.  So I might qualify as a male with some caregiving experience.  But,  it is so different when you have to watch your partner in life decline each and every day, male or female.  There's no fixing it, you just have to go along for the ride and hope that you survive.  I, too, find that I get frustrated and wish that I was more accepting and compassionate.  

I watched what caring for a spouse with dementia did to my dad who cared for his spouse to the end without any help.  I watched my neighbor do the same with some paid help.  I have read about how many of you keep at it.  You folks have set the bar pretty high.  I'm not sure I can match that level.  I guess all that each of us can do is the best that we can.

Thanks, I haven't posted here often but I appreciate you folks sharing and your support.  Stay Strong!

HVasquez

I just joined this group not knowing where to go to get advice on this hardship. I've been married for 40 years and started seeing my wife slowly deterioate.  She accuses me of not being a good caregiver and not wanting to be with me anymore because of it.  It's hard seeing her act that way because I know it's not her.  She seems to go into a depression and gets emotional alot and cries alot.  I'm used to fixing things and hard not being able to do much to help her.  Hope to get more information on being a good caregiver.

Ed1937

HVasquez, welcome to the forum. Sorry you need to be here, but it is a good one. You will get a lot of support, and excellent views on how to handle different situations. If you have any questions, and you should have, go to the top of the posts on this page, then click on Spouse or Partner Caregiver Forum. Once there, you can click on "New Topic" to start a new thread. Ask anything you want, and you will get replies. 

HVasquez

Ed1937  Thank you for your reply.  Hope to learn from the experiences of others here.