How do you handle the absence of love when caring for a spouse?

As hard as this may be to hear FarmerJim, it sounds like it might be time for you to be looking for a Memory Care facility to place your wife in. That way you can have the professionals looking after her care 24/7, and you can get back to just being her loving husband. They will make sure that she is getting showered and her hygiene taken care of.
Sounds like you've done a great job so far, but it might be time to hand over the reigns to others, so you can get your life back and rest in the knowledge that your wife is well taken care of.
I didn't really answer your initial question, but know this, if the tables were turned, and it was your wife that was looking after you in a similar situation, she would continue on out of love, and do whatever was best for you and her in the situation. So while you may not feel her love right now, you must know that it's still there, and you may even notice it more, when the 24/7 cares are not all on your shoulders. I wish you the very best. God bless you.

To be frankly honest, you put her in an facility and you visit her and attempt to keep hold of whatever good memories of the past you have, and you go on and make yourself a life in this one and only life you have. That's putting it flat out honestly the hard facts. OR you choose to sacrifice yourself. Your poor wife has nothing left but suffering. Please discuss palliative care with her doctor, and withdrawal of treatments that cannot cure and will prolong suffering for her. I am so sorry.

God Bless YOU for the care you are and have been providing.

My DH, when I had cancer, did as little as humanly possible for me. Didn't bring me meals, didn't do any housework or cooking. Never did a load of laundry or swept a floor. Took every out-of state job he possibly could. Wouldn't even take me to chemo. I still don't know WHY. He said my bald head really put him off. (Well, it was no picnic to look in the mirror for over a year and see my hairless head and face). He wouldn't even touch me. People said he was 'distraught' but all I could feel was him distancing himself as far as possible. It hurt and it still hurts.

If I were in your shoes--please look into a GOOD facility to place your sweet wife. If her memory is gone, then everything is but a sweet, fleeting memory, if that. You are a one in a million.

It took my mom areally long time to accept dad's passing and to not be angry with him for the many years she had to care for him. She had a LOT of help, and he never got any level of dementia, but they lived in tight quarters and it was hard on mom.

You will visit, of course, as you build your 'new normal' life. In time, the sadness of your wife's condition will fade and the good memories will return.

You still love her. You just don't love the person she is turning into--or rather, you don't love the disease. Big difference.

I want to thank you all for taking the time to reply? I guess I’m not as bad as I thought !

FarmerJim,

You are a good husband. But, you are tired.

Spend some time here on the forum. Do a search for “burnout”. You will find that MANY caregivers are in your boat. Also, you will find lots of different suggestions on how to go about getting some help for YOU.

God bless you.

FarmerJim I am right there with you. My wife was diagnosed with Alzheimer's in 2014 although she had short term memory loss from about 2011. The most painful thing I had to do was put her in a Memory Care Facility full time. This was actually the best thing for her AND for me. She is cared for by professionals with far more training and experience than I have. She is cared for, safe and content. That is the best care I can give her at this stage.

Homelyandbald has given you valuable advice from someone in the trenches who's "been there & done that." Why not tour some Memory Care Assisted Living places close by to scope them out? When I worked as a front desk receptionist in such a place last year, I met quite a few husband's who'd placed their wives there to live. They'd come to visit frequently and have dinner, or take them out to dinner, or out for ice cream or just sit together in the garden. When in home care becomes too overwhelming, as it often does with advanced dementia and AD, a memory care becomes the only logical, safe and rational answer for BOTH parties affected by the debilitating disease. No shame in that admission, only truth.

Wishing you the best of luck with a difficult situation

Write down a real list of everything you do for her and see what you can delegate.

Of my five clients today...

One lives alone normally but has his daughter staying
One lives in independent living but needs help at the moment
One is recovering from serious illness and lives with his wife
One is a young adult woman with a moderate to severe learning disability whose primary caregiver has recently had a stroke
One is recently widowed, has a broken arm, and is in the process of moving house at her family's instigation (I predict a riot).

What all of these people have in common is that their families love them very much and are closely involved in their care, but they need support. They cannot do it all. One difference our service makes is that it takes us 45 minutes to get through a routine - like showering, good example - that can take a family three miserable days of nagging to accomplish.

Not having to be the bad cop the whole time might be a real relief. Worth a try?

FarmerJim,
Rather than her being angry at you ...
Have a caregiver come in and help you out a few days a week.
The caregiver can be the "bad guy" and make her do the things she does not want to do.
It is also possible that your wife's reaction to having someone else help her in the shower will be totally different. It is amazing what some caregivers can get someone to do.
having a caregiver come in a few times a week will also give you a MUCH needed break. No one can do caregiving 24/7/365. You need time for yourself to get away and do something for yourself. A walk in the park, coffee with a friend, go to the barber. Anything for you.
Many people take for granted what is done for them on a daily basis.
Never mind the words that come from her mouth, it is what you know is in her heart that matters.
It is funny when I was caring for my Husband I would make a great dinner, put it in front of him and he would eat. (great appetite) Did I get a Thank You? NO! but if we walked through Sam's or Costco and they gave out a sample he would tell a total stranger that was giving him a crust of bread with the jam they were pushing "thank you"!
Rule 1 of caregiving..Take care of yourself.

There can be reasons for her not wanting to shower. When she does shower, do you help her? Although you may have even showered together over the years and even though you are her spouse, she may feel self conscious or even embarrassed now. By having you tell her it's time to shower may cause her to feel that you think she needs your help. She might see this as a loss of her dignity or being treated like a juvenile.

Don't tell her she needs a shower especially in a brusque manner. Try to prepare the room for her, have fresh clothes laid out, lay the towels out, have the shower running and warmed and have the room warm. “I got the shower ready, do you want to go first while I (make up something you have to do) then I'll shower”. Maybe establishing a routine, every so many days, for instance, would help. If it doesn't work, try the next day but don't argue about, it. Good luck.

Your quote “a servant/caregiver by necessity” shows your commitment to your wife. Never getting a thank you for what you do, feeling disgruntled, unappreciated is always hard to accept. Your wife doesn't understand what you do for her not because she's unappreciative, but because her brain has affected her ability to process any feeling of gratitude and thankfulness. Sadly, it's part of the caregiver's plight. Taking care of your wife for 5 years, I'm sure wears on you to the extent of affecting your relationship. Don't go beyond your ability to care for her. There have been some good suggestions, home care, memory care, etc. Your caring for her doesn't mean only at home. I, along with HomelyandBald (makes me chuckle too) , felt it was the best thing to do for both ourselves and our wives.

5 years of taking care of someone in her condition is a lot. I am assuming that she does not remember you as her husband? So, you would just be some nice guy that takes care of her? Whew, that'd make a tough situation nearly impossible. Putting her in a nice facility would be good for both of you. If not that, definitely get some help in the home so that you don't ever have to consider doing things like shower duty to get her angry at you.

Good luck!

You wife probably "thinks" that she is maintaining her hygiene. Since she can't remember earlier moments in the day, your scolding her to take a bath appears insulting. It might be easier to incorporate more hygiene moments into her very full day: wash arms when washing hands for a meal, wash legs and feet when getting ready for bed or before putting on shoes, etc.

Maybe consider altering the idea of a shower to
1 - bathing together and you both get some satisfaction. She may start to look forward to bathing again,
2 - bath as "spa day": soft music, dim lighting or scented candles. warm soapy water, caressing her back, massaging feet and arms, let her wipe areas she wants
3 - only airplane bath most days of the week, which means under the wings (armpits) and tail (bottom).
4 - install a bidet attachment to toilet that will clean front and back every time bathroom is used. The attachments are less expensive than the whole toilet seat
5 - say you want to treat her to a nice massage. Start with a really warm room with her covered completely by a big beach towel. Uncover one body part at a time to sponge bathe and then massage some warm lotion in before recovering. Always start with extremities first, then back, before torso and face. End with a kiss.

You have to establish an extremely ridged routine. Getting up, eating, activities, and a bathing schedule. Do the schedule everyday the same time. That is how I managed my mom for 15 years. Any deviation from the schedule would cause problems. And yes I had a bathing schedule. When I had to shower mom I did it three times a week. Right after her bowel movement. Straight in the shower. Every Tuesdays, Thursdays, and Sundays. She did not resist with a schedule because it was just part of the routine. Mom's Alzheimer's was so bad I had to tear out the bathtub and replace it with a standing shower with a lot of grab bars and shower chair. A bathtub was no longer possible.

She liked the standing shower much, much better.

This is a tough situation. I know someone else that is agonizing over this exact situation. Have you considered a family conference. All of you can weigh the pros and cons of different scenarios. Here's the thing. You are carrying a great burden. Allow others to help. Trust in your heart, that your love for her will help you do the right thing. And remember to care for you,

I was a caregiver for my husband, who died of brain cancer a year ago. The last months were hard - he was mostly lucid but had physical issues that made things rough. And he was definitely not the man to whom I had been married for 42 years. He was angry and frustrated to be losing his faculties. It was hard on me, but I tried to remember that it was harder on him.

To get through this time, I remembered the good times and reminded myself that he had been my caregiver when I had a stroke a few years previously. I prepared myself for life without him, getting people to stay with him while I kept busy with activities outside the house. God bless friends, hospice and home health!

Take care of yourself. Don't turn people away when they ask what they can do. And pray.

Good luck.

You have received many good observations, tips and suggestions...
I cared for my wife for 12 years and the way I did it was to pray for a
servant's heart... I looked at it as an assignment..

Reflecting upon those years, I value you them as the most satisying period of my entire lifetime..

My wife had a massive stroke and was completely paralyzed on one side. She could not speak...About one year after the stroke she began having grand mal seizures and every so often, she experienced one of them...She also had skin cancer, ingrown toenails, many UTIs, and the list goes on extensively.

Her attitude was good...she was cheerful. That was very helpful to me. We laughed a lot...We were high school sweethearts...we were married 61 years when she died in 2017.

I realize my experiences have nothing to do with you,,,I just wanted to share what it was like for me...
I wish you well..

Grace + Peace,
Bob

I also have this problem with my husband. I have someone to come in and help. If you have any daughters to come give her a bath, that might help since she doesn’t recognize you. Or see about getting a nurse’s aide to come in every so often.
My husband hates for me to “ order” him around. Even when I ask nicely.

Sometimes we don’t care out of love, sometimes it is out of obligation & doing the honorable thing. I want to have a clear conscience that I did all I could for a family member. Now my mother remembers nothing, but I do. I take care of her because I know she would be horrified at how she is now & of her anger at times such as bathing. In fact for her to feel more at peace, I gave up on her showers 3 yrs ago. The pelting of the water I think became too much stimulus & almost painful. So here’s what works for us- I attached a bidet to the toilet (you can find them at Lowe’s, etc for around $60), I only turn that on if there’s a messy diarrhea. She gets fresh & clean pj’s every night, same with day clothes. I also end up washing & changing the bedding & bed pad nightly due to inevitable pull up leaks. I just put the washer on a short rinse cycle, then wash cycle, dry it & the next day strip her bed, get the bedding from the dryer & put it back on & put the used bedding into the washer again. It all becomes a routine & it doesn’t bother me. If I got upset all the time, that would be emotional mismanagement. I choose to get chores done then do the fun things such as my garden seedlings, etc. She won’t wash her hands under water anymore either. I have to wet a wash rag, put soap on it & bring it to her hands. That’s all we do for hygiene. She doesn’t sweat. Once in a while hospice uses body wipes to clean her arms, face, etc. They check her hygiene & she is always clear of any rashes or any issues. I think the amount of fluid she drinks (4+ ensure drinks made with the more economical powder canisters instead of bottles, 3+ of water, and now she’s having 1-2+ of cranberry juice or lemonade) helps to flush her system & dilute any bacteria so that it also keeps her clean & free from infection. We wash her hair with a no rinse shampoo & it works perfectly well, leaving her hair shiny & clean. I know it may sound unhygienic to not take baths or showers but it has worked well for us for years with zero issues. I do keep track of the amount of fiber she eats. She eats an xl granola protein bar from nature valley for breakfast starters which keeps her bowels moving but fiber is limited to smaller amounts during the day so there isn’t an imbalance but occasionally it happens. Hope this wasn’t tmi but just trying to help!

Care giving is hard on both the Caregiver and the one being cared for.

When it gets too much, you should get help.

For now, check with her health Insurance and see if they would allow and pay for Home Health.

That would at Lease have a Nurse come out a couple times a month to check her, would also have an Aide come 2-3 times a week to give her a shower/bath and a Therapist come 2-4 times a week for upper and lower therapy.

Before you get totally burn out, You should take some time for yourself.

If there isn't family members or friends that can come watch your wife for a few hours a week so you can get out of the house then you should hire a Sitter or Caregiver and take a few hours 2 or 3 times a week and do something for yourself like go to the gym, go out to eat, go get a massage, go to Church, go to a meeting with others that have Spouses that aren't there.
It helps to talk with people going thru the same thing.

You might also engage your wife in things, even tho she won't remember them, she'll enjoy for the moment.

My 96 yr old Dad has dementia with about 5 minutes of present memory.

He enjoys it when I give him foot massage, or give him a manicure or Pedicure, he's pleased when I bring him a chocolate shake, ect. But, 5 minutes after I leave, he doesn't remember I was there.

Maybe you and your wife could try to live for the moments.

Can ya'll take a ride to the Beach, go have a Pic Nic at the Park?

Can you both do something new together like Paint by Number or do a puzzle?

Listening to music is good therapy for both of you.

GI've her a Massage.

Prayers

My mother is going on FOUR YEARS without a shower that we know of. ANd yes it is concerning, but she hates me and won't listen or cooperate (not that I am up to the challenge) nor will she cooperate with my father. If one more person suggests creating a spa environment I will learn how to use a gun! However the recent twist of bowel accidents has resulted in my contacting her MD who clearly is out of touch with reality (and whom I have not liked much from the beginning). I am likely going to contact a home care provider affiliated with the medical system her neurologist is affiliated with, not this moron who would be happy to have one of the out patient social workers contact me. I AM A DAMN SOCIAL WORKER and I know the resources. ANd no, with the dementia, there is a cluelessness...to odor, filth the whole thing. My mother is typically non violent as well but is nasty at her core, becomes combative and has strength beneath her short little stature. We locked her out of the refrigerator and she yanked on it so hard she got it open. I also think she managed to get a jar of pasta sauce open a few weeks back. They are like 2 year olds, and if determined...watch out.

While I understand all the feelings involved such as to what one is expected to do or should do, it is not always possible. Not everyone is suited to be a caretaker and often for very valid reasons. Second, I do NOT believe that people should be subjected to horrible behavior and other bodily problems that are extremely offensive (and I don't care why they happen - they do). If this is the case then the person should be cared for in a facility before the caretaker and/or family are totally destroyed.

My best friend of 30 years also has vascular dementia. She had a stroke 3 years ago. I’ve been her caregiver for two years. Her husband was incarcerated two a half years ago. So he’s not around and that adds to the madness. I have the same problems with her that you’re having with your wife. I am her only transportation. Sometimes it’s easier to get her to bath if I tell her we can’t go out until she bathes. Because people will smell her. Also helps to bribe her with going to the ice cream parlor. She was behaving horribly and to calm her down the doctor put her on nerve pills. She’s better now but if she doesn’t want to do something it’s still a battle. She has refused to wash her hair for 6 months. When her husband called I’d have him talk to her about her hair. And finally he was able to get her to wash it. I was having a hard time touching it everyday when I brushed it. She isn’t the same person she was and it just keeps getting worse. She thinks that there’s two of me. The same name but different people. She is seeing a psychiatrist and therapist I don’t think it helps other than the medication. I get angry but I hold it and remember she used to be my best friend. We used to laugh a lot. And she still is my best friend in there somewhere. I feel for her. This wasn’t her choice and I know she can’t understand what’s happening to her or even that she has changed. She doesn’t remember the stroke. It’s hard she really hurts my feelings sometimes. But I’ll take care of her because love really does make a difference.

One of the smartest men I ever met was a man named Frank Collbohm. He started the Rand Corporation. I was his cleaning lady. He was able to keep his wife home after her first stroke. When she had the second one, he realized her care was more than he could do. He placed her in a facility and went and had lunch with her every day. He was able to be her friend and spouse, not that guy that kept bothering her. I strongly urge you to do the same. If you don't think you can afford it, please talk to an Elder Care Advocate Attorney.

Many Hugs to you.

FarmerJim: Imho, firstly you are a STELLAR caregiver! Regarding hygiene, your dear wife has lost the ability, sadly, to realize that her hygiene has fallen by the wayside. Of course it's extremely difficult for you to not receive love from her and I'm sorry. I believe that you require assistance in the form of a home health aide, as no one person, albeit STELLAR, can do it all.

Many have suggested to take care of yourself Primary!
There are some workable things you may like to consider from this book by experienced and compassionate author:
The book titled "Caring for a Loved One with Dementia: A Mindfulness-Based for Reducing Stress and Making the Best of Your Journey Together" by Margueritte Manteau-Rao may help. The book offers a compassionate and effective mindfulness-based dementia care guide to help the caregiver reducing stress, stay balanced, and bring ease into the interactions between the caregiver and the person with dementia. It has good pointers for any care Giver

My mom is the same way. She used to be the most vain person you could ever meet. She has vascular dementia and now doesn't care at all about hygiene. What I find most useful is an incentive. She can still go out to eat and really enjoys it. When it's time to bathe, I ask her if she would like to go out to get her favorite meal, name the food, create a real desire. Then say we can't go until she showers first, because it's been too long. Usually works, but sometimes she gets really nasty, grits her teeth and says, "I hate you. I'm not going to," then it has to be postponed a couple of days. But there is no reward for bad behavior. Fortunately, she still is able to live at home, but I know that will change at some point when she can't continue the basics of living alone or starts to wander. My sister and I take turns going over each day. We don't let her cook, she doesn't try. We either take her out to eat or bring dinner & eat with her, then leave meals for breakfast and lunch for the next day.
Honestly, she has calmed down a lot since her husband died 1 1/2 years ago from cancer. She was a raging maniac and so mean to him even though he took such good care of her. Now she is thankful for us helping her. I am totally convinced she just needed more alone time.

One thing I wish you would ponder: is there a good reason at this stage for not putting her into Memory Care? They are equipped to handle all of this, and there is help available for the financial part. A lot of people don't realize Medicaid can take over without leaving you penniless. Imagine how nice it would be for you to just be able to visit and enjoy some time with her instead of being the mean one (not saying you are, but that's how dementia patients interpret it).

If you have the money, hire a person to come twice or three times a week to treat her to a spa. There are caregivers with a special touch for resistant clients. I ha be been taking care of my husband with Parkinson’s - now stage 4. He was diagnosed 17 years ago. He is an oversized two year old who will never turn three!

get as much help as you can. Contact palliative care providers. Use social workers from your state division of aging or a not for profit hospice. Build up your list of people who may help. You’ll be amazed what you can find - even in rural areas. Hardest part is learning to ask. Good luck.

Sorry that’s happening to you . Sometimes being a caregiver is never appreciated. I have always spoiled my husband . Years of 1 to 3 hour massages if I couldn’t sleep I gave him a massage all the way through a movie. He had one sinus infection in 22 yrs. He was never grateful he always put himself first. So I left him for two yrs then he called begging me to come home and get married . I gave him 6 months to see if he had changed . We got married , 9 mo later he stroked out leading to severe dementia and Parkinson’s. He’s diabetic has a 9,8 aorta aneurism. The dr said he’s a ticking time bomb. I’m the only person he knows , wants me in the room all the time. He’s in diapers can’t get out of bed I bath , shave , cut his hair change his diapers. I tell him I love him he just grunts . I tell him why doesn’t tell say it . Then he will say he loves me . He cheated on my all through our 22 yrs together having 3 abortions with 3 women I found his secret letters after I came back and 2 yrs after we were married . I had prayed two yesrs
for God to open his heart ❤️ so he would know he loved me and wanted to get married . Well God answered my prayers and brought me back home in time to
take care of him. No one else would have done it . He would be in a Nursing home
I was so hurt finding all the love letters where he brought women to our house while I was working . My problem is I didn’t stop loving him . I must be so stupid I get angry some nights laying next to him when he won’t let me sleep . It’s non stop bring me this or that he doesn’t like to know I’m asleep
as far as people who have had strokes stop being who they once were . Rick always put himself before me or anything . He was. Boat captain 30 yrs owned his own tow truck, helicopter pilot, could build anything , everything he owned was paid off .
I have no idea how I can continue to live him like I do . I just know ill
always take care of him. He’s mine completely now I dont have to
worry about him cheating anymore .
it’s so depressing knowing he will never know just how much I give up for him. He will never know how hard it is on me lifting , bathing , dressing him .
he doesn’t like showers or now baths in bed . I just bought a portable shampoo sink for him so it’s easier on both of us .
he will say I’m not taking. Bath I’ll tell him oh yes you are . I don’t let him choose
you have to do what’s best for your mate . Weather they like it or not . I’m the only person he knows so I would never put him in nursing home .
Caring for your wife or husband is a thankless job. You have to decide just how much you love that stranger they
have become . Love can forgive multiple indiscretions. Love can keep you going one day at a time . When you feel like beating your head with your own fist look at your mate Where would they be if you hadn’t stayed after their stroke or heart attack or what ever happened to them . You need to figure out do you still love them enough to over look tye outburst , the ungratefulness , your mate never saying thank you and by the way I love you.
My husband reaches out and holds my hand in the middle of the night wanting to know I’m still there snd he’s not alone I’ve given up what’s left of my personal life. I Never even thought of cheating on him all through our 32 years together Not one time did it ever even entered my mind . He is all I ever wanted .
the love of my life is now like a 2 yr old in diapers that I have to tell him what to do everyday . Being a 24/7 caregiver simply
drains a persons mind. It’s a lifelong commitment that person gives up so much to care for either spouse , or family member. Depression is now big part of your life so , you need to find a way to cope and also take care of your self .
without me Rick would be totally lost.
God bless all you caregivers it’s an endless job . With no benefits other than you knowing you did all you could to let them have good life 🙏🙏















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is there anyway you can do a "sit down" bathing. in other words have her sit on a "bath tub" chair and you wash her with a wash cloth, gently while asking her questions about her childhood? it might be a little distracting and she might be more willing to let you do it. make it a bi-weekly routine and talk about childhood stuff.....even if its a repeat of what she said the time before. its strange how the mind works,,,,,its like losing files of current things but the older files are still in tact. wishing you luck.

Getting help for a few hours a day, or even several times a week could be very helpful.

If a female CNA comes to assist her in the shower it may make all the difference.

When you get breaks like that, leave. Your wife will be happy to see you when you return and you may feel less burnt out too.