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Care Partner is the Husband
Curious in Wooster
Posted: Friday, May 29, 2020 1:07 PM
Joined: 2/3/2019
Posts: 11


Here's my take on ALZ. If your Grandmother had it, you might know something about it.  If an aunt had it, you might understand.  If someone's husband has it, that's another thing. My sense is that Care Taker who is a husband faces some incredible challenges.  I'm not looking for a debate on this topic.  If you're offended, that was never my intent.  I've only known a few "guys" who are care takers and we just see ALZ through a different lens.  

Are you husband caretaker?  What's on your mind. My wife is 72.  I'm 78.  She's had this disease for over four years.  We have good days and bad.  Like everyone else.  I'm doing just about everything for her...driving, $, meds...long ago she left that scene.  I'm her "program director" and her constant companion.  The family is really, really supportive, but they all have their own issues, but they're always asking what more can they do.

Thanks to the Covid 19, her attendance twice a week at a Memory Day Care is, of course, off the table.  I'm thinking until there's a vaccine, we're going to remain quarantined (in addition to ALZ, she has a compromised immune system...which means she's at the "at risk" status.  We go nowhere...except doctors...thanks to Walmart, we can "pick-up" our order quite nicely and with maximum safety.  I do cook, but I also use Mom's Meals and recommend them highly.  

Just wondering if there's some guys out there who might want to chat.  [Yes, I know, there are two things a man never wants to experience...his wife with ALZ and "chatting."]  Oh, well!


Ed1937
Posted: Friday, May 29, 2020 2:42 PM
Joined: 4/2/2018
Posts: 2918


Hello Curious. I'm not sure if I welcomed you to the forum, but if not, welcome. I don't know if it's harder on men or women, or if it's just a difference in people. I think for the most part, we have different challenges. For me, cooking has been hard. But I'm making it through. For many women, fixing things is the problem. Just a difference in the sexes.

My wife is 80, with vascular dementia, dx'd 2 years ago, and I'm 82. Like you, I do everything. She watches TV. But she's pretty easy to care for, and I count my blessings for that. We also have a supportive family, especially one daughter, who really makes things easier for me. So we have things in common. But I'm not really interested in "chat", although I do post most every day. 


Marie58
Posted: Friday, May 29, 2020 2:43 PM
Joined: 12/31/2018
Posts: 421


Curious, I admire all the caregivers here, but especially husbands. If the tables were turned and I had Alz rather than DH, I have no doubt he would do a great job caring for me. I bet he'd even learn how to do my makeup and hair, shave my legs, etc. But like a lot of men I know, he's always had to 'fix' things when they were wrong. For example, if I had an issue at work and came home complaining, he'd want to 'fix' it when all I really needed was to vent and have someone listen. He would have a terrible time if I had Alz and he couldn't fix it. If it's possible, I think his heart would be more broken than mine is in our current situation, if that's even possible.

Bless you!


Jeff86
Posted: Friday, May 29, 2020 6:49 PM
Joined: 10/24/2019
Posts: 227


Thanks for posting, Curious.  You raise some good points.  We as a society don’t cast men into caregiver roles.  But AZ strikes more women than men, so men are performing caregiving tasks notwithstanding social norms.  You’ll find many devoted husband-caregivers on this forum.  

My DW was diagnosed 3+ years ago but there were ample signs earlier, just an unwillingness to get tested.  Sometimes it feels like disease progression has been relentless, but I am also thankful for what is still possible and for what I don’t as yet have to deal with that many do.  It’s a challenge not to dwell on the losses.

In quiet moments—after I’ve put DW to bed, washed the dinner dishes, let the dog out, folded the laundry, planned the next day’s meals—I grab a beer and sit on the porch and think about the present and the uncertain future.  This is a lonely journey, and chatting with others taking the same trip is healthy, even therapeutic.  


Michael J
Posted: Saturday, May 30, 2020 12:57 PM
Joined: 2/19/2020
Posts: 9


This is my first post in this forum. My wife was diagnosed with AZ earlier this year, though the symptoms were there for the past two years. She does not receive outside services, though we cannot predict when that, or placement in a care facility may be necessary. We are both in our late 60's. I am having a very difficult time.

My greatest pain come from my need for an intelligent, loving woman in my life, something I am not getting from my wife now. I hope she lives a long, healthy and peaceful life. Though, I am not sure if I am up to the role of long-term caregiver as a companion.

It is difficult to have conversations with her because she is losing her vocabulary. I have to probe into what she is trying to say much of the time just to understand her. This is quite tiring. I forget this sometimes and start to have a meaningful conversation only to be faced with her declining verbal skills. Frustration ensues and I remind myself to either have more patience or to stop trying to have conversations that she is incapable of participating in. I try not to let my frustration show. I guess I am holding onto the past wanting it to stay the way it was.

I also perform the bulk of the work in our home and relationship. My wife does the laundry and light cleaning, and I do everything else. I take care of the appointments, medications, food shopping, finances, driving, etc.

My DW doesn't dwell on her condition and pretty much goes through her days relatively peacefully so I am grateful for that. We are both retired and COVID is keeping us home. I used to get out and perform at small venues - guitarist and vocalist. That's off the table now. I grew up in a large family of girls and crave female companionship, so I am feeling increasingly lonely. We don't have family near us. I don't want a relationship outside of my marriage and I am at a loss to know how to meet this need.

As other caretakers surely understand, caring for an AZ spouse comes with its own considerations involving companionship, love, commitment, deep emotional pain, and longing for something better. Perhaps other husband caregivers can help me out here. Thanks
mommom9
Posted: Saturday, May 30, 2020 2:42 PM
Joined: 5/24/2020
Posts: 57


I hear you. My Dad had dementia and I was his primary caregiver and he lived with us the last year with help at the end from hospice. Before that I cared for him in his home for 7 years. It was a 1.5 bedroom home that he lived in for years with my mom. My dad had a stroke and my mom died less than 6 months later.  I thought that  prepared me and always thought I’d do the same for my DH. The parent/child relationship and spousal relationship is totally different. The only similarity is the confusion.  My DH and I use to share everything and we were each other’s best friend. That side of our relationship is gone. Then you add being basically stuck at home without social gathering makes it worse. I Pray I can have the strength to keep him home. I feel that whether you’re a man or a woman taking care of your spouse and watching them decline mentally is devastating.
David J
Posted: Saturday, May 30, 2020 4:10 PM
Joined: 2/15/2020
Posts: 54


Hello Curious and welcome.  I am a husband caregiver dealing with DW’s decline for over 12 years.  She had a very demanding career which made her diminished mental and emotional abilities very clear early on.  She has early onset Alzheimer’s per the neurologist, but who the hell knows.  In the end, it’s all the same. Today she is totally dependent on me and can not be left alone.  She is my constant companion and needs to be entertained every waking hour. 

Luckily I can cook, and I can handle finances and I can even do laundry and clean house.  Like Ed, I’m not sure I really want to “chat”, but I occasionally come here for solace and venting. 

I don’t subscribe to”woman’s work” and “men’s work” distinctions, so I am not doing anything new around the house, I’m just doing it all. I think that’s the same whether the caregiver is wife or husband. 

As many have mentioned, the relationship with DW changes. We can no longer share our lives the same way, but we have moments.  Today, trying to watch the SpaceX launch, DW was upset about something and could only express “I don’t have....” over and over. I could get really upset or I could watch it on replay. Very enjoyable launch on replay, already knowing that it would turn out ok.  

So come back to the forum and share how things are going. 


Stuck in the middle
Posted: Sunday, May 31, 2020 12:36 AM
Joined: 6/4/2017
Posts: 385


Michael, I understand your craving for female companionship.  In my experience, men and women can be friends so long as both parties want it that way.  I have had several friendships with women, some lasting for years.  More than once, though, the women lost their husbands through death or divorce, and they started seeing me in a different light.  When that happens, you have a decision to make.

I have recently formed friendships with two spouses of PWDs, one a neighbor and another a former co-worker.  I am a man and both are women, so I arrange our get-togethers as couples.  I don't have a lot in common with the men, but we all enjoy company and, in this group, no one is very surprised if someone behaves oddly.  Sometimes we help each other.  Beats sitting home watching TV.

 


Crushed
Posted: Sunday, May 31, 2020 4:37 AM
Joined: 2/2/2014
Posts: 5656


I have been on this road for more than ten years.  Before dementia I was a Husband Homemaker. 45 years ago  I married a stunningly brilliant young woman. She was a medical student at the time. We were total partners in every way.  I ran the household and she ran the world.  Over the next 15 years we both worked incredibly hard and had two wonderful children.  By 1992  I was a full professor in both Home Economics and Engineering and she was director of the most innovative medical technology program in the world. By 2010 I was Professor Emeritus and she held the top medical position in the government in her field.  She was 57 

Then the world came crashing down.  MCI  at 57, EOAD at 59 Steady loss of every kind of mental and physical skill.  I was her sole caretaker until she went into Memory care in 2017 at the age of 65    

She has left me in every way a person can leave without dying. She has no memory of me or her work or language or anything.  She loves my brownies. She doesn't know her grandchildren.  She is the love of my life, but no longer my wife. My Mother had and died of dementia. DW's  mother had died at the age of 57.  We both agreed long ago that neither of us should feel obliged to live alone if dementia or death happened to the other.  My daughters are totally supportive, but they do say no dating anyone under 50.  

So I am free but I am still alone.  My therapist tells me it is because when you have been married to Wonder Woman  its kind of hard to start over with anyone else. 

  I'm 69 and life has been fairly bleak this spring.  I have two fabulous daughters and 5 grandchildren.  DD#1 is a PhD with FDA and DD#2 Is a Maryland assistant attorney general regulating health care facilities. So they have been busy. 

DW's facility has had 3 deaths and 23 more infected out of 55 patients. I worry constantly but there is nothing I can do. 

 



Curious in Wooster
Posted: Monday, June 1, 2020 11:07 AM
Joined: 2/3/2019
Posts: 11


One of the joys of being a grandparent is to watch infants and little ones as they busily go about learning how to be a human being.  They nap often because all that learning is exhausting.  If you watch them closely enough, you can almost hear the wheeling in there turning as they learn new and exciting skills.

Yes, you guessed it, ALZ is just the opposite.  You watch each day as one more skill is lost...forever!  It doesn't matter what she was before, what she is now surely isn't who I married 900 years ago (or so it seems!)  No matter how good or bad today is, tomorrow will be some how worse!

I watch the launch of two astronauts, I learn how to track the International Space Station on my phone, I watch in horror as militants undermine public outrage over racism.  And, when I turn to say to her, "Can you believe this?"...well, that's when the loneliness really sets in.  And, it hurts.

I don't want to chat.  But, it sure is comforting to know that I'm not alone...and neither are you.  One size doesn't fit all.  We're all different, but we all hurt.  Hopefully, just putting some of the pain into words helps.  It does for me.  


Stuck in the middle
Posted: Monday, June 1, 2020 1:32 PM
Joined: 6/4/2017
Posts: 385


I don't know how many times I have been in a diner or fast food place while traveling and met lonely old men who were nursing their coffee and clearly desperate for someone to talk to.  Caretakers can't even do that, because they have to stay home.  I feel for you.  

I had a pretty good life worked out before covid.  Lunch with friends 2-3 times a week, volunteer work at the grade school, Alzheimer's caretaker support group, water aerobics class.  Gone with the wind, now.  


Bill_2001
Posted: Monday, June 1, 2020 1:44 PM
Joined: 9/16/2019
Posts: 77


 

Stuck in the middle wrote:

I have recently formed friendships with two spouses of PWDs, one a neighbor and another a former co-worker.  I am a man and both are women, so I arrange our get-togethers as couples.  I don't have a lot in common with the men, but we all enjoy company and, in this group, no one is very surprised if someone behaves oddly.  Sometimes we help each other.  Beats sitting home watching TV.

 

This seems like a wonderful situation. With all the support groups out there, it would seem that this would be a more common set up. The main reason I do not attend support groups is simply because my DW cannot be left alone, and I really cannot bring her with me - what would she do, and where would she wait while I attended the group meeting?
You have found what I think is an ideal situation. If I could just find such a group that would INCLUDE the PWD, it would be wonderful.

Social situations with my DW and our friends is becoming much more than just awkward. Although our friends know what is going on, I get the pleasure of trying to hold up two sides of a conversation, and the added fun of watching the 'normal' other couple(s) still sharing real meaningful conversation with each other. It is VERY tiring, and most of the time, I just pass on the invitations. 

It would be wonderful to go out with two other couples in my situation. I would have two other normal people to talk to, and they would completely understand. As a bonus, the spouses with dementia may even 'talk' to each other, giving us caregivers a real break.


ScottyTom
Posted: Monday, June 1, 2020 2:24 PM
Joined: 5/12/2016
Posts: 70


One thing I've noted in a kidding manner is that this is too much like being a wife - it's hard work!  I do all the cooking, cleaning, washing, bills, everything.  That includes dressing my wife, trying my best to do her hair and makeup when we go out anywhere (rare these days).  

We watched our two granddaughters after school for the past several years.  About the time the younger one was three, I noticed that the granddaughter's abilities and my wife's abilities to accomplish ADL's was crossing.  By the time she was four the little one learned to lay out her clothes and put them on herself.  Not so my wife.  Soon thereafter, the little one could use a phone, not my wife.  The little one learned to make a PBJ sandwich, my wife lost that ability.  They were truly crossing paths.  My wife now occasionally has "accidents" regarding toileting and if she does she tries to hide it but she is not capable of cleaning up and the problem becomes obvious.  The granddaughter has passed that phase.  Many people think AD is simply a bad memory, but memory includes things like how to use a phone or make a sandwich or pour a cup of coffee.  Now she occasionally forgets where the light switches are, etc., etc.  My inspiration over the years was always my uncle.  My aunt developed Parkinson's and my uncle cared for her for years.  This man who once carried a carbine and backpack through the jungles of the South Pacific now carried his wife from bed to couch.  I hope I can live up to his example.  Someone once said to me, "I bet you sometimes think 'I didn't sign up for this.'"  Wrong, I signed up for exactly this when I said "I do" to the query "for better or worse, in sickness and health...until death do you part."  A vow before God and community is a serious matter...Okay, enough preaching, but that is what it comes down to for me.


Stuck in the middle
Posted: Monday, June 1, 2020 4:27 PM
Joined: 6/4/2017
Posts: 385


When we had in-person Alzheimer's Association support group, before the plague, the support group had a day care for the PWDs.  A "babysitter" led them in making crafts, of a very simple sort, while we had our meeting.  I didn't use it, because my wife is able to stay alone in day time, but many others did.  If support groups resume, this might be an option to explore.
Kibbee
Posted: Monday, June 1, 2020 5:32 PM
Joined: 6/1/2020
Posts: 10


Michael J - I hear you about missing being able to have a conversation with your spouse.  I am finding it harder to talk with my husband about matters big or little.  He seems to have no interest in anything other than watching TV / movies.  (Although I am grateful for that because it keeps him happy and entertained!)  But back to the conversation thing - I keep trying but it can be pretty frustrating.  He will often respond by saying he doesn't remember, or just shrugs.  I have taken over everything .. earning the $$, making all investing and spending decisions, home and yard maintenance, doctor / dentist arrangements, medications, shopping, food prep, laundry .. you name it, it's on my To Do List.  

Like you, I also miss having a relationship but have no interest in pursuing something outside of marriage.  Luckily I have a couple great bachelor friends that I have known since college - I trust them and we get along very well so that provides some male companionship without any confusing expectations or complications!  I also have some outstanding neighbor guys who help me when it's a mechanical or fix-it issue beyond my skill set, or when I have a project that needs muscle.

However, I do have a recommendation for you.  Check out Meet Ups.  It's an online app (free) that posts social gathering in communities all over.  This is not a dating app!  It's just a way to find out about activities of interest in your area, that you can do with like minded people.  You can set the filter for the kinds of activities you enjoy and it will send you alerts when there is something appropriate in your area.  I joined an "over 50" group and set my filters for activities like hiking, walking, art tours, foodie events.  It has been a nice way to get out and interact with different people.  Hope that helps.


Kibbee
Posted: Monday, June 1, 2020 5:59 PM
Joined: 6/1/2020
Posts: 10


Bill_2001:  I understand your comments about trying to socialize with other couples / friends.  My husband says he wants to go, but then doesn't interact once we are there, so like you, I end up trying to hold up both sides of the conversation and keep things normal.  Whew - it can be exhausting.

What was most interesting to me is your reference to watching your couple friends interact together in a way that you and your wife no longer can.  More and more I find myself watching my friends as they discuss and solve problems, make joint decisions, and especially - laugh, vacation, and enjoy life and each other.  Do they know how fortunate they are?  I have never envied any of my friends' material possessions, but I am now suffering from relationship envy!

 


Curious in Wooster
Posted: Thursday, June 4, 2020 9:55 AM
Joined: 2/3/2019
Posts: 11


Today, it's just two very simple questions. Again, my focus is on guys who are Care Partners.  Question:  Why should you never drop anything on the floor?  Answer: Because, if you drop it, you pick it up.  Who else do you think is going to pick it up?  The problem is, that if you're reading is, you're probably like me...older than sin...and just getting down to pick something off the floor takes me too long, stretches too many muscles, and bothers me for the rest of the day.  So, don't drop things.  Question #2:  If you serve water at the table for your spouse, should the glass be empty, half full, or full?  Answer:  If you answered "empty" you shouldn't be reading these posts, hang up and immediately dial 911.  Have you not heard, "hydrate, hydrate, hydrate."  If you answered,  "half-full" you know you are correct.  Why? Because if you are caring for someone with ALZ and it can be, it will be spilled!  And, you're going to clean it up.  And, when you do, you'll say to yourself, " Boy, I'm glad that glass wasn't full."  More questions to follow!
Michael J
Posted: Thursday, June 4, 2020 2:47 PM
Joined: 2/19/2020
Posts: 9


Thank you for sharing your experience. It helped.
Jane Smith
Posted: Thursday, June 4, 2020 2:55 PM
Joined: 3/23/2015
Posts: 109


Hope the spill wasn’t too hard to clean up. 

What about a grabber tool to reduce the bending down to pick stuff up?  Can help with other items out of easy reach too. 


Curious in Wooster
Posted: Friday, June 5, 2020 12:54 PM
Joined: 2/3/2019
Posts: 11


OK, two more questions today.  First Question:  what is the most common illness for a male spousal Care Partner?  Answer: Schizophrenia.  Now, you're going to ask why?  If your wife's memory is scrambled (and that's the best definition I know for ALZ) then she'll be living on her emotional side most of the time.  That means, since she doesn't have much of a grasp of the past and her sense of the future is minimal, she's living in the NOW.  She'll want you to be with her and if you're going to communicate at all with her, you have to be present in her now.  And, that's where it gets really tricky, because you can be present to her as much as you can, but at the same time, you're planning supper, putting together a list for the grocery, making sure you've got a handle on her doctor's appointments, etc., etc., etc.  In other words, you're living in two worlds simultaneously and that's not easy.  It wears you out.  OK, second question is much easier.  Question:  What's your favorite song?  Answer:  Billy Joel's "Just the way you are" with its repeated refrain, " I love you just the way you are."  If that doesn't make sense, see Schizophrenia above.  Her world is right here, right now.  You know that hers journey isn't going to get any better (that's why we Walk2endALZ), there isn't a cure.  If, on the other hand, you are torturing yourself trying get back to how it "used" to be, that isn't going to happen either.  You just "love her just the way she is."
Bholmes
Posted: Friday, June 5, 2020 1:42 PM
Joined: 2/24/2020
Posts: 35


I have been trying very hard to figure out how "I need to deal with my DW decline lately" she has digressed and is a solid Stage 5. I am researching getting outside assistance, that won't put me in early bankruptcy. I cannot Work at home and care for her by my self now- I just can't -and I have no family to help except every once in a while, so I need to bring in someone from an agency for care duties.

So reading this post I thought I would share my daily "Rituals" but instead I found a link by a guy who writes a million times better than I could https://goodmenproject.com/featured-content/notes-to-self-on-living-with-a-person-with-early-to-mid-stage-alzheimers-disease-bbab/

He writes about what he goes through with his wife with Early AZ (as my wife was also diagnosed as EO -  My wife was 61 and she is now 65). 

Michael Carley writes in a way that is like he has a camera in my house and reflection of my brain, except the fatherhood parts - as we have no children. I encourage you to click the link and read the article as a Husband caregiver.


JJ401
Posted: Friday, June 5, 2020 3:54 PM
Joined: 6/19/2018
Posts: 100


Regarding support groups:

Local senior center here has two. They meet once a month on different weeks.

First is a spouse /friend /sibling /child of group. This one I attend by myself. I find it helpful to sit and talk with others so know exactly what is happening in your home. 

Second is called Memory Cafe. It's for both the person with dementia and the caretaker. Coffee and pastry and an activity for all. This one I have not attended as my husband, while having slid again,  is not quite ready for this yet. But, once he can no longer be left alone we will be there. 


Rex37
Posted: Friday, June 5, 2020 4:35 PM
Joined: 11/24/2019
Posts: 1


Hello. My wife is 84 and I am 83. She was diagnosed with Alzheimer’s two years ago. About the same time she had a medical emergency that left her with an ileostomy and an external ostomy to remove waste material. I am her sole caretaker as our children live hundreds of miles from us. I do everything for her as she has no understanding of her mental or physical condition. After two years I am really tired but carry on best I can. Not ready for a nursing facility yet but guess that is ultimately in the cards. Thanks for reading.
Neilnov
Posted: Saturday, June 6, 2020 8:44 AM
Joined: 6/5/2020
Posts: 2


To Curious and all the other husband caregivers: I am a 71 year old husband caregiver. My wife, 80, was diagnosed six years ago, but I believe she had AD for several years prior to that.  I’m new to chats, bulletin boards etc., so I am not entirely certain how this works. Is this a discussion board, chat room, bulletin board? (Sorry for my ignorance here, just never did this before.) My wife’s decline has been very slow, but she still lives at home and does so little that I think she is safe. Before the pandemic, I could leave her alone for several hours at a time and not worry too much. Her short term memory is gone and her long term memory is failing. She has occasional confusion about where “Home” is, thinking it’s her childhood home. 

But she is incredibly oppositional about certain things, most notably, hygiene. She refuses to shower, change her clothes, use deodorant, etc. so being with her lately has been, shall we say, difficult. She is also so modest that the idea of me helping her undress, change clothes etc, is a non-starter, and I would be risking major agitation if I tried too hard to force the issue. I know I will soon need professional in-home care to deal with this, but feel paralyzed in seeking help. Especially now, when interpersonal interactions with strangers has become so risky, especially with people our age. 

Anyway, that’s (much of) my story. I feel the need to talk or correspond with folks in my situation, but other sites I’ve looked at emphasize care for aging parents and other older relatives. As several of you have pointed out, caring for a spouse, especially a wife, carries unique challenges and having a spouse with AD has meant dealing with a kind of loss that I simply wasn’t prepared for.

How do I proceed from here?


Ed1937
Posted: Saturday, June 6, 2020 9:43 AM
Joined: 4/2/2018
Posts: 2918


Hello Neil. Welcome to the forum. Sorry you are dealing with this too, but you have found a great place for support and help from other members. 

This is referred to as a "message board", as described by the top of the page. I refer to it as the "forum", as do many others. But it really doesn't matter what you call it, as long as you know how to get here again. You have done an excellent job on your first post. Nobody would know you haven't been doing this for years.

Just about anything goes here. You can start a new thread to get help with questions, or just to rant. We talk about many things, but the main use is to talk about dementia, and solutions to problems. We talk about cooking, things to laugh about, sex, and anything else that comes to mind. Please read many of the posts, and you will become "at home" very quickly. 

Hygiene is a common problem with our loved ones. There are several threads on this, and there are many possible things to try. You can do a search at the top of the page on any forum where you can see what threads are active at the time. If you want to start a new thread, you can do that by clicking on "new topic", which is found near the "search" button. Give it a subject line or title, then ask any questions you might have.


Beachfan
Posted: Saturday, June 6, 2020 9:46 AM
Joined: 2/1/2018
Posts: 485


@Bholmes,

Thanks for the link. I am not a “husband caregiver” and I appreciate the frustration and seriousness of caregiving, male or female.  But I have to admit, I had a few good chuckles while reading the article.  It is spot on.  Thanks for a laugh.  


Garym
Posted: Saturday, June 6, 2020 4:28 PM
Joined: 6/6/2020
Posts: 1


I have read all the posts and I think I can relate in some way to each of you . I just joined this group. I was beginning to think I was the only guy going through this.  I have been through one war and a corporate merger and I have never encountered anything like my wife's dementia. Every date since 2016 has been a learning experience. I just keep trying to put one foot in front of the other each day. Best a wishes to each of you.

 


Michael J
Posted: Saturday, June 6, 2020 7:19 PM
Joined: 2/19/2020
Posts: 9


Yes, I keep trying to "fix" my wife but am lately letting go of trying to do so. I vascilate between hope and acceptance. It takes a bit of both to keep me going.
Michael J
Posted: Saturday, June 6, 2020 7:22 PM
Joined: 2/19/2020
Posts: 9


That is my question. I wonder when I will no longer be able to care for DW at home. I don't think past today, though I can't predict the future and find that focusing on the current day with whatever it brings is enough. I do think that this attitude is allowing me to adapt slowly to our changing relationship. One day at a time.
Michael J
Posted: Saturday, June 6, 2020 7:28 PM
Joined: 2/19/2020
Posts: 9


David, it can be difficult taking on additional jobs in the house. I have been fortunate to be the one to manage our finances, household repairs, etc. I am also good at making and tracking appointments, etc. so I have been managing our joint calendar for the past few years. I manage all of my DW's healthcare and other arrangements. Keeping busy this way actually helps. As AZ has progressed, I now do most of the food preparation - DW stopped being able to follow a recipe quite some time ago. I enjoy this part of our arrangement. I can see how I might have to take on all of the household chores within a year or two, but that won't be much more than I am doing today.

Hmmm, I guess I am rambling, aren't I. It helps me to take stock of my situation so thanks for listening.
Michael J
Posted: Saturday, June 6, 2020 7:32 PM
Joined: 2/19/2020
Posts: 9


Hi Crushed, though your DW and mine are quite different, I felt the emotional toll that is wearing on you. Thanks for sharing.
Michael J
Posted: Saturday, June 6, 2020 7:34 PM
Joined: 2/19/2020
Posts: 9


Thanks Kibbee, I'll do that
JJR7
Posted: Wednesday, June 10, 2020 9:29 AM
Joined: 2/6/2019
Posts: 15


Comfort is not the right word, but I as I read these posts, I see that I am not alone.  I have experienced the same fears, frustrations, and hopes as expressed here.  We have been married for 49 years, met when we were 16,  we have been retired for 10 years, and the first 8 where as we planned, but as the saying goes, Man plans, and God laughs.  My DW, once a vibrant, active, confident individual is now a shadow of herself.  I have seen significant decline in the last 6 months, and often wonder want tomorrow will bring, and how long I can continue to be her sole caregiver.  I am thankful that she is calm, and will take direction, although I must repeat myself several times.  This is in contrast to what we dealt with a few months ago when she would often break down in tears and express how afraid she was.  I attribute some of the change to the fact that I don't think she is as aware as to what is happening to her.  She does remember people and relationships, a blessing at this time.  Personally, I have good days, and not so good days.  I do all of the household chores, and when she tries to help, she often just gets in the way.  I have tried to find kind words in these situations.  Thankfully, I am able to do activities I enjoy.   But I honestly feel that we are walking through a dark tunnel with many unknowns hidden in the darkness.  I wish you all strength, love, and peace as you too take this walk.
Curious in Wooster
Posted: Thursday, June 11, 2020 9:22 AM
Joined: 2/3/2019
Posts: 11


The only time that “one size fits all” is death.  Everything else is about our differences…some call it “intervening variables.”  Which means that while I may have a wife and you have a wife, our worlds are different.  And, if your wife has ALZ and my wife has ALZ, our worlds are really quite different…except maybe, we both live in pain!  It’s said that ALZ is a degenerative illness, so no matter how good today is, tomorrow will be a bit worse.

 However, I think that “degenerative” has more to do with the husband Care Partner than the wife.  There’s only a few people who know what it’s really like and they’re Care Partners.  Know what I mean?  Try this one!  When someone says to you, “How are you?” How in the world do you respond?

We’re all different but we share in the pain. We’re connected through pain. Here’s hoping you have a good moment.


Neilnov
Posted: Saturday, June 27, 2020 6:27 PM
Joined: 6/5/2020
Posts: 2


Michael,

I am a fairly new member, but just saw your post. With very few exceptions, your description of your situation is identical to mine, including your wife’s current condition. When I talk to my wife about anything that’s going on in the world, I am fully aware that I am really talking to myself, as she has no ability to remember the conversation for more than a minute or so. She can no longer complete sentences and has little ability to even name or identify objects in the house.


But the part of your post that affected me the most was when you talked about your desire to have a loving, intelligent women in your life. I feel that exact need. 

I also desperately feel the need for the intimacy, both physical and emotional, which used to be so important, and is now non-existent. Certainly the emotional intimacy is gone, because of her inability to express herself. But now, my wife doesn’t even want me to touch her, much less be physically intimate with her. I can’t begin to say how much I have missed this. 

I’ve read a great many articles and letters and blogs about whether it is “moral” for a caregiver to have an intimate relationship outside marriage when his spouse has AD. Some believe “till death do you part” should rule your behavior. Others feel that caring for (and still loving) a spouse with AD should not necessarily mean that you must forego all the needs that were once fulfilled in your marriage. 

I’m sorry I can’t help you or anyone make that decision. It’s too personal. For me, if I met someone who fulfilled that part of my life, I would not hesitate to have such a relationship. I say I still love my wife, but it certainly is a different quality of love than it used to be. I admit that it may no longer be ‘love’ but rather devotion, which is different. 

I know that at the end of your post you asked: “Perhaps other husband caregivers can help me out here.” I can’t, except to say that your post helped me feel a little less isolated. I hope mine does that same for you.