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

dayn2nite2

Part of this equation (and this will be different for everyone too) is if the shoes were on the other feet, would this person I am taking care of be taking care of me or would they have abandoned me some time ago.

Those living with people who were less than good spouses/partners prior to dementia might have different answers than those who had good relationships.  I think we know in our hearts what that answer is and that also affects our endurance.

Palmetto Peg

The question about whether the person we are caring for would have cared for us if we were the ones with dementia is an interesting one.  I think my husband would have done it for a while, but he has always put himself first and when it became hard, I believe he would find care for me in some form or another. and be able to look the other way even if it wasn't ideal care.  When his parents were ill, he hated going to see them, and when we went it was up to me to check out what was going on, try to make conversation, and he was always looking at his watch or phone.  It does make it harder to see myself in the situation some of you are with totally dependent spouses.  I am going to take it one day at a time, and try to do the best thing for both of us.  Right now, I don't know what that is.  I feel a friendship with him and I feel bad for what is happening to him - especially because I can see the fear in him.  He is scared to death, and it would be very hard not to have compassion for him in this situation.  

I was unsure about posting this topic initially, but I am so glad I did.  The conversation has been so helpful, and it is great to see how others are dealing with similar feelings.  Shared experiences make things so much easier!  Thank you all so much.

June45

dayn2nite2 wrote:

Part of this equation (and this will be different for everyone too) is if the shoes were on the other feet, would this person I am taking care of be taking care of me or would they have abandoned me some time ago.

Those living with people who were less than good spouses/partners prior to dementia might have different answers than those who had good relationships.  I think we know in our hearts what that answer is and that also affects our endurance.

You are right.  My husband is not abusive or aggressive. As a matter of fact, he often thanks me for taking care of him. But I know for a fact (99.9%) he would not take care of me if the shoe were on the other foot.  He has always been detached from the needs of those around him. Early on in the course of this disease when I was particularly frustrated, I commented that he would probably not take care of me if the situation were reversed. (He has always known that he has Alzheimer's.) He admitted that he probably wouldn't.

CStrope

Wow....so many things to think about and respond to.  First off, my husband has always been quite self-centered, and I the one to make his life easy.  So for several years before diagnosis, when I'm sure the effects of Alzheimer's had already begun, my life and our marriage was struggling.  His defiance and need for self preservation was front and center of every conversation and everything we did.  Arguments were often and very heated.  Then came the wonderful diagnosis. So like I said, looking back I know some of the problems from the years BD (before diagnosis!), were partly from the effects of the disease.  That being said, it does not erase the hurt I suffered from the breakdown of our relationship. To say that I still love him would be difficult.  I do feel a sense of responsibility towards him because we have been married 35 years, and I do respect our commitment but I can't say that I'm treasuring every last moment we can share. I do look forward to hopefully having a second life at some point, and I don't think that I should feel guilty about that.  I have spent many many years putting him and our kids first, and I would like to think that there will be some years left when I can put myself first.

Every one of us has a slightly different story and set of circumstances, some treasure every last moment, some want it over so they can move on.   3 Cheers for those that had the most amazing spouse and wonderful marriage, but that is not the case for all of us.  Some of us just had decent relationships that managed to make it through several decades or more.  What we do have in common is this crappy situation we are forced to deal with.  

Pooh Bear

Newbernian:

How are you doing now, after seeing the lawyer?  I read your posts with so much in common.  I hope you are having a good Sunday.

jfkoc

Would my husband have taken care of me? No. Would he have continued to care about me yes but not care for.

I loved my husband and had I given it thought would have known his "caregiving limits." His limit would have never entered my mind as to what kind of caregiver I would be. 

I think we are who we are. I did what I did based on who I am and not anything else. I am the only one I need to see in the mirror and I did not want to let myself down.

That, I think, is the big question to answer. What do I need to do to not let myself down.  The answer, is of course, different for each of us.

I think it is a good idea to work through each day as it comes doing what is best for ourselves as well as our PWD.

Just my 2 cents in the pot.

Lynne D

I have been following this thread for a while and have not been courageous enough to post. I am caring for my HWD of 25 years. I am certain he would have been diagnosed with a narcissistic personality disorder before his aneurysm and subsequent dementia. He was an emotional terrorist to his daughters and me. I wonder if I still care for him because I was co-dependent or because I am a good person. He would certainly not give me the care I am giving him.  Regardless of why I am here, I am miserable. Some of you can see differences in behavior in your LO. I have to ask myself if it is the dementia manifesting, or the same old A-hole he has always been. I am ready for the next phase. I would gladly institutionalize him but am determined not to lose everything to him and this disease. It will hang tough and not impoverish myself financially so that I may enjoy the next phase of my life.

Nicely-nine percent of the time I keep a lid on my feelings and am a good caregiver. I suffer guilt for wanting this to end, and you know what that means. Someone who is as angry as he cannot have a good quality of life, and mine suffers just as much caring for this miserable POS. I am drained of compassion after the emotional abuse I have suffered. Yet I persevere in being a dutiful and cheerful caregiver. FML.

DrinaJGB

Before that horrid day that changed our lives completely we had been together over 30 years. DH was kind, considerate,calm, brilliant, and funny. All of these things made me love him. He never would have hurt a hair on my head.Never. He was always the calm in a storm and I loved being with him all the time. He was my very best friend in the world.

After his brain injury, however, he came home a totally different person. He had been in facilities for 4 months ad came home in a wheelchair with 2 infections. He had lost 50 pounds. He was belligerent, loud, combative and a nervous wreck.He had night terrors and bizarre behaviors---such as eating inedible things; chewing on sheets, blankets, shirts, towels, etc. He would get himself out of bed and scoot to the kitchen in the middle of the night and clear out the pantry---eating raw pasta, coffee, dog biscuits, it really didn't matter.

 One night I came out into the den and he had sat on the floor and consumed an entire apple pie and 12 cups of yogurt in one sitting. He was sexually inappropriate in many ways---which was mainly words as he was impotent as well. But he would say nasty things to me that my "former" husband would never have uttered in one million years.

  I later learned---years and years down the line because not ONE of his doctors ever explained his behaviors to me---but later found there was a name for it--Kluver-Bucy Syndrome. It took over a year for him to calm down, but I had been kicked, hit, bitten, yelled at all during the night, grabbed, pushed, etc. in the meantime.

When such a complete change occurs in your life so quickly --(having coffee and planning your day together, and 2 hours later in a life flight helicopter)---you desperately look for the reasons it all happened, but you never get any answers. A random and rare brain disease is all you get. During the time spent looking for any answers you so desperately need---you start to change. When you are left with this ghost of a person you once knew more than anyone else on earth---who has now made your life so intolerable--an odd thing begins to happen; you start to turn on yourself. Because there is no one or nothing else left to blame.

A survival switch flips on, and you become a robotic, non-feeling, non-person ---just like the person you are caring for. Two ghosts roaming the streets of Hell together.

And then you are left with one question only---who can love after all this has happened? You are hollow and raw and scooped out--just trying to make it through another day.

janeymack

Lynne D. - I suspect we are married to the same guy!

CStrope

Janeymack, Lynne D and I are going to start a club.....WONWA   Wives of Narcissists With Alzheimers!

Lynne D

janeymack wrote:

Lynne D. - I suspect we are married to the same guy!

Could be! I always suspected he had relationships outside of our marriage and he recently said something that supported my suspicion. Also, he handled finances and I was terrified of staying afloat when he could not work anymore. After I took over finances, LO and behold we had the same if not more money. 

Cstrope, strange how the NPD manifests so similarly. Sadly, we are in the same club! I am glad to be in such good company, ladies.

John1965

Stolen Car is a relatively obscure Springsteen song, but one of my favorites. The stolen car is a metaphor for staying in a relationship once love is gone. 

 https://www.azlyrics.com/lyrics/brucespringsteen/stolencar.html

I hate this disease!

Iris L.

Palmetto Peg wrote:

  he was always looking at his watch or phone.  

My brother is like this.  He would not make a good caregiver, he is not attentive.  He would make arrangements for care but he would not do anything himself.  Thus, I decided I have to make my own arrangements. 

Iris

Daizey

Are you working with a neurologist? They can prescribe medication for the anxiety, which will even out his temperament. In addition, a professional may have other suggestions which you haven't considered. My heart goes out to you. This is hard enough when you love your spouse.

extex

CStrope.  It’s been some time since I have read or posted here.  I hit the jackpot with this thread today.  Do we have to limit your club to wives only?  Can we guys get in the boat?

CStrope

extex by all means join the club!

Buggsroo

The question if things were reversed would your spouse do the same for you, that you are doing for them, gave me pause. My husband would try but would no doubt have to hire someone to do what I do for him. 

Do I love my husband like before? No. However, I feel terrible for what has happened to him. I miss the wonderful person he was before, his sharp wicked wit that made me love him and marry him. 

He now is a petulant, self absorbed person who will argue, heap abuse and scream at me, the caregiver. If he isn’t eating all day, sleeping or yelling at people, then he asks the same question over and over, not remembering or not liking the answer. 

I feel very alone, thoughtful conversation is non existent and now it is just strings of words that are either demands for services or meals. I play mahjong on the computer to keep my sanity, I need some form of mental escapism. 

extex

Buggsroo, it doesn’t get any better.  I have been at this with my wife for over 10 years.  She is an energizer still chugging along.  There is no conversation or interaction at all.  She comes when I call her.  She still eats very well, sleeps about 10 to 12 hours each night with the aid of Seroquel, wets her pants about two or three times each day, and I’m just the guy who does stuff for her.  She has no idea who I am most of the time.  After going through several in home care people to help me, I finally found one who is really great.  I thank the good Lord every day that she stays with us. I live in a rather low cost of living area of our country so I can hire help for only a few hundred bucks a week.

I strongly suggest that you find a way to get away from your caregiving duties at least a couple of days every week.  Otherwise you will likely wind up with either mental or physical problems, or both.  Also make sure all your legal documents are completed while he is still able to provide signatures that will be valid.  Protect access to your banking, savings, and brokerage accounts as applicable.  Alz victims are known for wildly spending or giving away family assets without telling anyone.

Romance within this union stopped a long time ago.  I just take each day as it comes and put out the fires as they arise.  Unless you want to place him in a care facility that is about all you can do.  I’m pulling for you in getting some relief from your daily drudge.

Buggsroo

Hi Extex,

Thank you for your honest reply.

I have no illusions that it will get better. I appreciate the fact we are in the same boat.

Last night I taped the vent in the basement so that the heat would not reach me. I run a fan down there when my husband jacks up the heat to 83 degrees. Today when I went down there, he had removed the tape. All I can say, it was lucky he was upstairs and I was downstairs. Otherwise, his life would have been considerably shortened.

All I can say is that I wish we caregivers enough sleep, peace and calm.

A final note here: My husband calls me the Warden when I lay down the law. I like it.

joytoy

Our stories are almost alike except we never got married.  I struggle with not getting angry with my boyfriend over dementia related problems because I feel I shouldnt have to take care of him when he has 3 children.  Only one helps me a little.  I feel guilty when I want to get away leaving him with the one son who really doesnt want to be here so I know hes not taking very good care of his dad.  Guilt is what keeps me here.  Been dealing with this for 3.5 yrs. I can see many more ahead of me.  I dont hate him I wish this never happened to him but it did and I have to somehow show empathy and compassion for him.  I do okay most of the time but after hrs. of incessent poor me attitude I get angry and I finally blow.  Just keep trying to do better every day.