What if you don't love your spouse with dementia?

Palmetto Peg

This is a very hard question to pose, but one which I struggle with every day.  My DH and I are a second marriage, and it has been a rocky one.  More than once I wanted to walk away, but after being divorced once and starting over, that idea became harder to imagine, especially as I got older.  My DH is very controlling, and has been verbally abusive on many occasions.  He is of the "stop speaking to me for a week" variety if we ever had an argument.  He has two children and I have two, and his children always came first.  He would send them large amounts of money out of our joint account without telling me, and then get really ugly if I asked about it.  My children were always treated as second-class citizens and we had many arguments as I tried to see that they received what they needed.  I had a responsible job and contributed financially in a very real way, but he always used the terms "my money, my house, etc."

The children are grown now, but the hurt left from the lying and verbal abuse have left their mark.  He also has a thing about social drinking, and would not hesitate to grab a drink out of my hand in front of people, and tell the room that I had had enough.  I can't even remember how many times I have been embarrassed in this way.  Sometimes you can wait too long to leave and it becomes almost impossible because you are so financially intertwined.  Before I really noticed his illness, things were getting better, but I felt more as I would toward a friend who I had ups and downs with than a spouse who I dearly loved.

I posted before about him constantly grabbing me in a sexual way - not caring where we were, and also about how paranoid he has become lately.  I see this long road ahead - as many of you have endured - but I see the love in your comments.  I feel very bad that this has happened to him, I will not leave him to struggle with this alone, but I need help in how to care for him without becoming resentful.  

Does anyone else feel this way?  I have thought about counseling but we did do a lot of marriage counseling and I didn't ever feel that I got a lot out of it.  Any suggestions would be so helpful.  Thanks for listening!!!

dayn2nite2

If this were me in this situation, I would get a divorce and a fair settlement and move on with my life.  It doesn't really sound as if the marriage was ever really good and definitely on the abusive side.

After the divorce, I would let his children know that I am out and they need to take over with the financial situation he has at that time and I would live my life.

How many more years are you going to waste?  What if you found out you had a terminal illness today and you'd be dead a few years from now?  How would you view the time you've already put into this relationship?

Newbernian

I can relate to your situation.  This is my only marriage.  DH was previously married and has two children from a previous marriage.  It has always been about his children and business.  Suffering from CPTSD, I stayed in the marriage because I found no way out.  His son has stolen large amounts of money through our business.  I had my eye on the books but it was a few yrs. before I discovered how he was doing this.  My husband and I argued over this for years, then when he saw what his son had done he fired him and they haven't spoken since.  We eventually sold the business after taking a huge financial hit, moved out of state and he is now into about 5 years of the disease per my observation.  Our DR is no help.  But I digress.  I struggle to be kind, to discover my "better angels".  He has become more mellow at times but I feel, too little, too late.  

I am resigned to the fact that this is all there is.

Palmetto Peg

I don't see myself divorcing him.  Although it wasn't a good marriage, I feel a responsibility to him after all the years we have been together.  I am 71 years old now, and I have no interest in starting over, dating, etc.  I can say I would probably be more likely to place him in care down the road than some of you who have kept your spouse at home until they don't recognize you, are incontinent, etc.  Fortunately, we do have some financial resources to do that, but a divorce could change that.  

I'm really looking for ways to help me cope, not lose patience, and give him as much kindness as I can.  How does anyone know how much they can give?  His children would not help him.  They are two of the most selfish human beings I have ever known.  They were raised to think the world revolved around them, and would leave him on his own for far too long.  I can't do that.  

I was just wondering if anyone else here was in a similar situation and how they found the strength to do the right thing.  With the divorce rate so high, I imagine others have found themselves with a spouse who was ill, even with another terminal illness, and became a caregiver reluctantly.  Thanks for any input!

DrinaJGB

Frankly I feel that anyone who can say they still love their spouse with dementia after all the apathy, indiffernece and exhaustion must be some kind of a saint. I am surely not a saint, and I was very much in love with my husband for over 30 years. He was my best friend.

  But over the years I have been chipped away both emotionally as well as physically taking care of his every need and being taken for granted the whole time. It changes you and how you feel about someone you once were so in love with.

  It hasn't  helped that his siblings have made my life a virtual hell for all the years since DH was comatose. I am no longer the woman I was before this happened. I don't really call it love any longer because is it love when it is so one-sided?

  I try my best to remember it is the illness and not the man, but the man I loved is no longer here although I am totally responsible for his welfare and well-being and every single other thing on the never ending list.I suppose you can call me cynical.I can only call it commitment because I believe love has flown the coop --just like the man I once loved and married. If it weren't for my dogs I do not know if I would still be sane. I so often feel washed up, dried out, used up and forgotten. I guess it's the nature of the beast.

Crushed

family law is not my area but I have referred at least 4 couples to experts to analyze divorce. 

three were demented abusive husbands one was a psychotic wife.  Ugly but necessary. 

The three husbands were all eventually divorced , the psychotic wife was placed. 

Ed1937

I feel really bad for those of you who are in a bad marriage. Fortunately, ours has been good for both of us.

Peg, I can tell you that there are good therapists, and not so good therapists. Please don't give up on them. Find a new one. A good therapist is like finding a gold mine. They can make a huge difference. 

Beachfan

Peg, 

My initial reaction was LEAVE!!!!, leave yesterday and don't look back.  But I understand your thinking and your decision to try and hold on out of commitment or whatever responsibility you feel for him and for your marriage.  My only advice would be to thoroughly examine your legal and financial situation.  You may have resources to place him, but be sure you don't damage your resources in the planning.  Make sure you and your own children are financially safe in the future.  I've no doubt that his children are lurking in the wings and will swoop in to reap anything they feel is "theirs" as his kids.  Unfortunately, this could get very messy if all the legal and financial aspects are not tied down.  Good luck.  Yours is a very sad situation.  

Palmetto Peg

I knew I would get good advice here!  I can absolutely understand why, even if you loved your spouse in the beginning, that love can be lost in the grind of years of working so hard for no appreciation.  I am going to pursue counseling for myself, and I am going to make an appointment with our estate attorney to see if everything is in place if I did decide down the road that I can't do it any longer and want to divorce him, or if I can't do it any longer and he is at a stage where a Memory Care placement would be appropriate.  I am both his legal and medical POA, but I will follow up and be sure there is nothing else I need to do given his illness.

I have some deal breakers and should he ever become physically abusive and there was no solution to be found I would leave, but I felt that way even before he became ill.  He has been better about not constantly grabbing at me in a sexual way, but only because I told him if he didn't stop I was going to leave him.  He is still rational enough that I think he knew I meant it, but that may change as time goes on.  We have an appointment with a neurologist in October - and I am going to follow the advice I got here and give his staff a letter to give him before we go in and I will outline exactly what is going on.  

I know this is a long road and we are pretty much at the beginning.   It is sad that I am really the only one he has who will at least try to care for him.  I know many of you are in the same position.  Thank you so much for responding.

aod326

Hi Peg. What a horrible situation - looking after someone with dementia is hard enough even when you truly love the other person. It sounds like you feel you want to stay, at least for a while. In terms of pointers, I might suggest stepping back from him emotionally. Treat him as if he's an acquaintance that you've been employed to take care of. That way, you won't experience quite so much of the hurt, but will be salving your desire to help him.

Very best of luck.

abc123

Dear Peg & all of the other unfortunate souls trapped in a bad marriage, now caring for a spouse with dementia,

I am truly sorry for you. Hopefully your PWD will die sooner than later. I realize that sounds crude but its how I feel. 

DrinaJGB

Gee,abc123-- no reason to get spikey; but then again I guess it's just how you are.

I feel like the Pink Floyd song--Comfortably Numb.

Stuck in the middle

Many years ago, a therapist told me that only one marriage in six was happy.  Two ended in divorce, and the other three stayed together but wouldn't do it again.  The divorce rate has changed since then, but I suspect the one in six has not.

I think a lot of the posters on this board are the fortunate one in six.  You and I are in the three in six, not happy but unwilling to quit.

When you say you won't leave him because no one else will care for him, you are treating marriage as a duty and caretaking as a job.  All I can suggest is you maintain your professional attitude.  "This is my job, and I do it as well as I can."  You can take pride in a job well done, even when it is thankless and the duties are menial, and even when you strongly suspect he would not do the same for you if the situation were reversed.

I would not blame you one bit if you left him, but you have answered that.  Good luck to you.

dayn2nite2

DrinaJGB wrote:

Gee,abc123-- no reason to get spikey; but then again I guess it's just how you are.

I feel like the Pink Floyd song--Comfortably Numb.

I feel like death for the PWD is a kindness for them, they’re out of misery.

June45

Stuck in the middle wrote:

Many years ago, a therapist told me that only one marriage in six was happy.  Two ended in divorce, and the other three stayed together but wouldn't do it again.  The divorce rate has changed since then, but I suspect the one in six has not.

I think a lot of the posters on this board are the fortunate one in six.  You and I are in the three in six, not happy but unwilling to quit.

I am also in the group "three in six, not happy but unwilling to quit."  And abc123, I don't think what you said is crude.  Many of us get to the point where the quality of life is horrible for both spouses (partners) and we want it to end.  But that is not in my hands.  I just keep getting up everyday (usually sleep deprived) and repeat the drill.

Iris L.

Hire help!

Iris

June45

Iris L. wrote:

Hire help!

Iris

Iris,  it isn't always that simple.  In 2018, Hurricane Michael (Cat5) set us back in healthcare when our hospitals were damaged and many doctors whose offices were destroyed decided to retire or leave town.  Housing became expensive here so health care workers of all sorts left town because they couldn't afford to live here.  Then Covid came along and put a nail in the coffin.  I have hired a caregiver exactly 4 times in the last year so that I could have medical procedures. Each time it was a disaster...one had a cold, one was late, one was intimidated about taking a man to the toilet and one time the agency forgot to get somebody for me and I had to read them the riot act.  No family nearby, no friends to help out.  Oh and let's not forget these folks don't do it for free.

DrinaJGB

Not sad. Not happy. Not anything, really. Just numb. Just present. 

   But up every single day-shifting once again into auto pilot, nevertheless-- for over a decade taking care, and being his advocate. And it will stay that way until one of us dies.

Palmetto Peg

When my in-laws were old and ill, we hired people to come in and care for them.  It was a nightmare.  Some of them were okay, but they had to have days off, and we found that the night and weekend aides left a lot to be desired.  My MIL got such bad bedsores she had to be hospitalized, one of the aides yelled at her when she was delusional and saying there were roaches in her bed (she had Lewy Body Dementia), and none of them were really trained to deal with dementia.  One stole all of my MIL's jewelry, and it was just a revolving door of quitting and hiring, quitting and hiring - and it was not inexpensive!  My MIL was in a nursing home for a while and that wasn't great, either.  She cried all day, my FIL was sitting by her bed all day and falling into bed totally exhausted at night, and the care was just so-so.

Even though my marriage was not good, I am going to do my best.  I am hoping that I can always remember the early days when I was crazy in love with him, and look at the good that we did have.  The 3 in 6 stat sounds about right - some of us stay even when it isn't good.  It is the right thing to do, and perhaps there will be some good times now, too!  

This conversation has helped so much.  I don't wish him dead (sorry ABC123), but I do wish him peace.  I think we all want that for anyone with this terrible disease!

Buggsroo

Peg,

You are a wonderful person.

I don’t if I could stay in such an environment, let alone deal with his obnoxious children. He is lucky to have someone like you who cares. 

My mother was married to a very difficult man; my father. He was an alcoholic, controlling and very angry. My mother’s life started when my dad went into care. He had to behave in the home, my mother visited him three times a week, but if he misbehaved or was stroppy with her, she would just leave.

I think being compassionate but keeping your emotional distance is a good thing. Hopefully your money can be separate from his and your children and you have a good relationship. I am very close to my mother and brother, it helps. I hope you have friends as well and they can help.

I still love my husband but I don’t like what this disease has done to him. Sometimes I loathe him to be honest, he stinks and eats all day, but then I come to my senses and realize his brain is broken.

Rennbird

You sound like a very considerate person.  No matter what the relationship was like in the past, I found that the only way I could survive was to release my husband from all expectations.  I still felt a moral and spiritual commitment but in my mind, I saw him as a fellow traveler on this pilgrimage we call life and it was my job to serve as his guardian.  I did not always succeed.  By placing him in Memory Care, I was able to retain my sense of dignity and personal well-being.  As the disease progressed, I saw him more as a suffering child.   He could not control the disease.   It was beyond us all.   I would recommend counseling for yourself so that you can gain some perspective and find a way of coping that meets your needs.

DrinaJGB

I had hired help years ago and it was a disaster. Alhough my DH was recovering from a brain injury he still had the wherewithal to relate to me that his caregiver took him to some shady neighborhood one day where he left my DH in the car. My DH was so freaked out about this that he hid his wallet afraid the caregiver would steal it.He said to me that day when I got home from work "I don;t trust that guy. I'd rather stay home by myself."

   I found the wallet a month later way up in the linen closet. I also confronted the caregiver with the story DH had told me, and he actually admitted he had taken my DH out of the house so the caregiver could "see a friend". I fired him on the spot. He also stole my husband's Serenghetti sunglasses out of his car. So to tout "hire someone" is not always as easy as it sounds. I quit my job and cared for DH myself. that was over 10years ago.   

Newbernian

My DH and I went to an eldercare lawyer 2 days ago.  We had already done a will and POA's 2 years prior right after he was diagnosed. However, I knew that any kind of healthcare is almost untouchable.  My Mother had brain tumors 14 years ago.  I hired a woman to come in for the night so my husband and I could go out.  At that time the cost was $15/HR not terribly exorbitant but when it is a stranger and you don't get a good vibe, it's worse.  I laid out Mom's meds and asked if she would see that she takes them, well no that is not their responsibility.

I wanted to go away for a long weekend to our vacation home with a girlfriend. I didn't want my husband to have to deal with this responsibility. So I contacted a local assisted living about "respite" care.  They met me, my Mom and my sister (who was useless).  They said Mom would be brought down for a meal to the dining room 3 times a day and would be looked after.  Nice place. I thought with some one looking after her and my sister checking in, right, this would work.  My sister called me one evening about 2 nights into this and said there were problems with Mom.  My girlfriend drove me home because I had just taken a sleeping pill and it was a 4HR drive. I went to the nursing home around 9:00AM.  She was not in the dining room with the others, so I headed to her room.  She was in her wheel chair.  A tray of food in front of her and was totally out of it.  Her mouth was smeared with brown goop.  I thought the worst that it was feces.  I called her family DR talked to his nurse and said I don't know what to do.  My Mom was a diabetic.  She said tell them that with Mom's insulin she could go into a diabetic coma and call an ambulance to get her out of there. The supervisor came in with the attendant on the floor.  They saw me come in and I guess got there stories straight.  Well the brown on Mom's mouth was her iron pill which she didn't swallow.  Ambulance came she went to the hospital where she was given proper care and was then released to another full-skilled nursing home.  There was only money for one month's stay then Medicaid would take over.  Mom passed in that month.

What I found out from the lawyer was that every state has different regulations about getting medical assistance.  Our state offers aid to MC which are in assisted living.  Medicare/medicaid doesn't pay for this and there is a cap on the income.  My husband's SS income was too high.  So the only way anything could be paid for is having a Doctor sign a need for skilled nursing care and Medicaid would pay for this.  But the lawyer said he would need 45 days to move things around to get Medicaid to pay.

My advice, find a good eldercare lawyer.  Get referrals.  Preferably a social worker or Agency on Aging.  The 1st eldercare lawyer we saw offered no advice just took down information.  Made up generic forms w/o getting clarification and charged $800.  Documents I will now throw away.  This lawyer was not cheap but he asked good questions got us thinking and gave us real info about what to expect and how to do work arounds.

Unless you are significantly rich or able bodied then none of this info will benefit you.

Quilting brings calm

abc123 wrote:

Dear Peg & all of the other unfortunate souls trapped in a bad marriage, now caring for a spouse with dementia,

I am truly sorry for you. Hopefully your PWD will die sooner than later. I realize that sounds crude but its how I feel. 

 

ABC…. I know your recent backstory and that your Mom is beginning stage 7.  So I know exactly what you meant here. I myself hope that my Mom passes away before she gets to stage  6.  She wishes that she would die in her sleep right now.  She’s absolutely miserable.  The antidepressant change has help her mood some …. But has made her  somewhat more  aware of her situation.  She doesn’t want this future for herself or for me in terms of  taking care of her. 

I certainly don’t wish my situation continues indefinitely …but it is what it is and just like you I will put one foot in front of the other and carry on, 

Peg - I’m not going to equate my parents to your spouse… but there’s no love between me and my parents,  just a sense of responsibility as their daughter.  Ironic, since they never felt that towards me. 

DrinaJGB

From my perspective there is "in love" and there is "love". I am no longer "in love" with my DH after this horrific road and completely one-sided relationship, but I stay because there is still love between us.

  There is a difference. I have been left to feel more like his mother over the years.It's just the way it is, and I do not EVER wish for him to die as I do not know after over 40 years what I would do without his company--albeit greatly altered--if I look very hard and long I sometimes get a glimpse so clear of the man he used to be that it literally takes my breath away.

  And that is why I will always fight for his safekeeping and never give up. At night I cut out my heart at some of these challenges, but in the morning it is full again.

Paris20

Peg, it’s hard to love anyone with dementia. My husband and I have known each other for 59 years, married for 57. We literally grew up together. We shared so many memories and we’ve loved each other as a married couple and as best friends. 

Now, most of his memories are gone. He repeats the same question incessantly. He pees in his pants, yells at me, passes gas and burps in front of anyone. He has to be forced to bathe and shave. His skin is hanging because he has lost over 25 pounds in the last five years. I’ll stop there. You get the picture.

I was one of the lucky ones, in a good marriage, career, children and grandchildren. I don’t feel particularly lucky anymore. Still, those memories that DH has forgotten are part of who we were and who I still am. I love him as a lost friend. For those who do not love their spouse, the torture of dealing with dementia would be intolerable. Life really is too short to postpone the happiness that I was fortunate to enjoy.

French

Peg, difficult to answer.

I like the comment on "in love" and "love"... I would add "respect"

I think I am no more in love and for long. And I think it began when the disease began. I couldn't know what was happening, nobody could in fact. But he wasn't anymore the man I fall in love of. He was no more brillant, he was lying to me (I was thinking that but now I don't know if it was on purpose)... I stayed with him because I have divorced before and I need stability for my children. Their father had just divorced a second time and I could see how they have been impacted. 3 divorces, it's a lot for children ! Also I wasn't unhappy. I had a very good life, we were enjoying it together (nice home, nice holidays, lot of friends...) and we were free of doing our own activities. It was just that the stars were gone as it is certainly the case of most couples.

And now. I'm no more in love = sure, I love him = not sure. I respect him and he needs me = sure, he deserves my caring = sure.

But now the balance is too unbalanced. If I continue, I will hate him.

 So, for me, loving or not is perhaps not the good question. But it is important to know when you might cross the line between positive feelings and negative ones, because then nobody will win anything.

LadyTexan

I love my husband. I love him differently than I used to. In many ways, I love him more deeply than before because I see him face the demon of Alzheimer's disease without fear on a daily basis. I admire his courage.

Caring for my husband is difficult and exhausting. I cannot imagine that I would be able to care for him without resentment, if I did not love him. If I resented him, my caregiving effectiveness would likely wane. It would not be healthy for either of us.

I do not wish a painful death on my husband. I do not wish a painful life for my husband. I do not wish longevity for him either. If my husband dies before he has to suffer another day with Alzheimer's, I know he and I would both be okay with that. He has told me, "I haven't missed a lick". He has lived a full life. I accept that he is ready to die.

jfkoc

You are in a difficult position. Please to not underestimate how just plain hard being responsible for another person can be.

You have gotten posts filled with things to thin about. My two cents. Weigh things out as best you can...pro/con and make a decision...a commitment that you choose. When you make it do not think it is or the rest of your life because stuff changes. Just make the decision that you can manage and one you will be able to live with with out regret.

We are here to support you whatever you choose.

slippednfell

I feel like the less love, the less heartbreak. The less heartbreak, perhaps he teasier to provide care in the manner some suggested (from the point of view of it being a job).

I know my DH will eventually get to the point he will be like a child... I have already adjusted my thinking to the need to become more of a "mother" than a wife.

DrinaJGB

Yes it changes your perspective. At first I felt a sense of betrayal by him and now as years have evolved, it feels like a job I go to every day---but without any pay. I have become guarded and detached over the years---but I know it and I see it as a protective mechanism. It seems to work.