General Question

breathe's avatar

If your spouse has Alzheimer's, what do you do with the rest of your life?

Asked by breathe (249points) July 7th, 2010

This friend of mine, has a fairly young husband with advanced Alzheimer’s disease. He is in a home, where he will stay for the rest of his life. The healthy spouse is wanting to get on with her life, but doesn’t know if it is the totally wrong thing to do. They have no kids, but her family says she will bring shame on the family if she goes out with a gentleman friend. What is your opinion?

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46 Answers

Simone_De_Beauvoir's avatar

This is something my partner and I have discussed at length about but I still don’t think we can extrapolate…what we will do and feel if that happens…

john65pennington's avatar

The marriage vows stated, “for better or worse”. they are still married. commiting adultery would only add fuel to the fire. if she cannot tolerate the situation, get a divorce first.

chyna's avatar

This is a very hard question. I want to put myself in both shoes, the one who doesn’t have alzheimer’s and the one who does. Honestly though, I cannot imagine myself going out with anyone else while my spouse was still alive and we were still married.

Dr_Lawrence's avatar

What a tragedy, for both of them. Sometimes it seems like the “right” answer is more cruel than the “wrong” thing to do seems.

I would never desert my wife, if this happened to her. I would not divorce her or leave her. I would sit with her, read to her and remember the years we had together.

Ltryptophan's avatar

I would say if both people are older than 65 then one should look after the other…absolutely, and stay married.

If one is younger than that arbitrary age I mentioned, then I would say that the healthy spouse should absolutely endeavor to care for the spouse that is ill no matter what. But at the same time if they feel like they are missing out on their own life they should divorce (symbolical) and pursue their life.

They shouldn’t abandon, in any way shape or form, the sick spouse though, no matter what, and they should seek out a person to share their life with that would be willing to make that spouse a part of his life too.

JLeslie's avatar

That is so very sad. I think she needs to stay loyal to him in terms of visiting him, spending time with him, showing him love, even if he forgets she was there 10 minutes later. I also think it is ok for her to move on with her life. If she finds someone new she is interested in he would have to understand her situation and be willing to take a back seat. I don’t think she should be out looking, but I could understand if she met someone interesting that she might go on dates. For me I have a hard time imagining it. I am so in love with my husband that if he were sick I can’t imagine being interested in dating other men, or really moving forward completely without him while he is still alive. But, I have heard that people with chronically ill terminal or severly disabled spouses sometimes do wind up needing time having some “normal” interactions with adults, like it is some dirty little secret spouses do not talk about, because they do not want to disrespect their spouse, and they fear most people would not understand.

I think she should join a group that gives support to spouses in this type of situation, talk to others who really understand through experience what it is like to be in her situation.

perspicacious's avatar

For better or worse, sickness or health. That’s me. It would have nothing to do with what my family said.

JLeslie's avatar

I wanted to add that I completely disagree with getting a divorce, even if she does move on in some fashion. Some may view it as cheating, but to divorce a person and leave them alone in a home in the last years of their life is horrible to me. Worse than staying married and also moving forward.

Seaofclouds's avatar

For better or worse, in sickness and in health til death do us part. I would stay by my husband and do everything I could for him (kind of like the husband in “The Notebook”).

Buttonstc's avatar

Interestingly enough, there was a segment about this very thing on a recent newsmagazine.

Most of the report focused upon the life of the woman with Alz. and her life as a news reporter, the inevitable decline and her life in the nursing home.

At the end, the reporter doing the story revealed that this was his wife and how heartbreaking it was for him to visit her when she didn’t even know that he was her husband. Hers was a case of early onset Az. which made it all the more poignant.

He also included the mention of his current companion who accompanied him on his regular visits to his wife and completely understood how much he loved her and that she would be an integral part of their life together.

The best thing your friend can do is to follow her own heart and conscience and tune out the relatives. When dealing with a situation as difficult as this, no one can give advice on what someone else should/should not be doing.

Each person has to make that difficult decision for themselves, not to please a bunch of relatives.

But it certainly is possible for her to remain loyal to her husband and have a satisfactory relationship with another AS LONG AS that person has the grace to deal compassionately with the situation and not make selfish demands upon her or force her to choose between them. If she can find someone balanced enough to make that possible, she would be foolish to discard him due merely to jealous relatives.

Buttonstc's avatar

If you’d like to read more about the segment I just mentioned you can find it on the website for CBS Sunday Morning.

The reporter is Barry Peterson and the segment just aired this past week. It was titled “Jan’s Story”

Perhaps this might be of some help to your friend.

Buttonstc's avatar

I didn’t realize until visiting his website that he has written a book about this also entitled
Jan’s Story. The website gives a pretty good overview and could be quite helpful for your friend to read since this is a viewpoint from someone literally walking in her shoes.

Perhaps a copy to the judgemental relatives might also prove helpful, particularly since he has in no way deserted his wife Jan. He cared for her at home for many years until her confusion and anger outbursts made the situation untenable. Evidently she is pretty content in the facility where she now resides and she receives regular visits regardless of whether remembered or not.

breathe's avatar

@Buttonstc I agree 100% with you. All she does is sit at home crying. She told me she felt her life was over too and when he dies she should too. This is very hard for me to deal with, because I am not qualified. But, I do think she needs interaction with adults going places and doing things. She has absolutely no intention of divorcing him, she still loves him very much. But if she keeps on the way she is now, she will die before him. They are middle aged, first marriage for both. Thank you for the lead to information that may help her. I will find it and print it for her. This is indeed a very sad situation. We all think we know what we would do, but until we are there suffering and lonely, we don’t really know.

Buttonstc's avatar

there is also a brief video about this on YouTube. Just put the title into the search bar.

Does she have computer access ?

breathe's avatar

@Buttonstc Yes, she has computer access, but rarely uses it anymore. I have gone with her to see him, and it is like someone is sticking something right through your heart. I have had to leave the room for a few minutes on several occasions. But after being there with her, I honestly believe she needs someone to hold onto. She has no hope and her faith is all but gone right now. She is not the same person I know, and I would like to help her get back to herself again.

Buttonstc's avatar

Probably one of the best things you could do for her at this point would be to find an Alzheimers Support Group in the area and offer to go to a meeting with her.

It would do her an enormous amount of good for her to realize that there are others in her exact same situation.

The website above contains a listing of Alz Support groups all over the country and I believe you can also download the list and print it out.

It’s a really difficult thing to deal with but she needs to know that there are resources available and she doesn’t have to go through this alone.

The YT video is only 3mins or so but beautifully done and well expressed. Send her the link for it or sit down with her and watch it together.

It’s really important for her to realize that she doesn’t have to go through all this in isolation.

Boy, how dense am I. I just discovered that they have the full video of the complete story (rather than just the written transcript) right there on the CBS website. For some reason that escaped my notice first time around. There’s also a link to it on the Alz. site above.
It’s very well done and tells the story beautifully.

JLeslie's avatar

@breathe I don’t think it is unusual for her to be grief stricken and depressed. I thought maybe she was moving on and feeling badly about it, but it sounds like you want her to move on, that it is not really where she is at emotionally. You can’t make her move forward just because you have a hard time seeing her in pain. Pain would be a normal response. She should get some counseling to work through her emotions or find a group as I mentioned above. I would be inconsolable for a long time if my husband was very ill or died.

breathe's avatar

@JLeslie She has been going through this for quite sometime now. Some of the things she has said to me, like “I would love to be able to go out with you guys and have some fun, but she is afraid of what her family will say to her. Trust me I am not guiding her in any direction, I would like to help her with what she wants. Most of their friends have abandoned her since he had to go into the home. She hates the loneliness, the quiet, no laughter, nothing to look forward to the next day. She really want to enjoy her life and tend to him as well.

zenele's avatar

My uncle has it. It aint easy.

Each couple is different – just love and patience and – well, I don’t really know how to do it – I pray I’ll never know.

Pied_Pfeffer's avatar

If she is getting involved in a romantic relationship while still married, I can understand why some family members would get upset. If she chooses not to go out with a friend or a group of people because she is “afraid of what her family will say to her”, then it is a whole other matter.

breathe's avatar

@Pied_Pfeffer Not hardly involved in a romantic relationship. She hasn’t been anywhere. She is so afraid of what her family will say. She is even afraid to go out with my husband and me, because she thinks she will have fun and she shouldn’t do that. She keeps saying it’s the family, and that I don’t know her parents. They would make her life miserable, well how much more miserable can it get?

Pied_Pfeffer's avatar

Thanks for the clarification. It’s a bit different than how I interpreted the OP. It sounds as if you are doing the best that you can for her.

breathe's avatar

@Pied_Pfeffer sorry if I wasn’t clear in the beginning. I tried to keep it short. One of the things that really irk me is their friends have abandoned her, basically except me and my husband. Some friends. I know she will come around, I just have to be patient until she is ready to say okay let’s go somewhere. That will be a happy day.

zophu's avatar

If the husband would not have wanted her to move on if he ever got so mentally ill, he shouldn’t have been her husband in the first place, I think.

But, after reading into this more, it seems like that may not be the issue.

ANef_is_Enuf's avatar

This is such a tricky question. I genuinely can’t decide how I feel about it, so I can’t imagine how difficult it must be to actually try to answer it for yourself. Having dealt up close and personal with Alzheimer’s many times – I know how hopeless it can feel to be on the other side of the glass, so to speak. I also know that a person may not remember who you are, they may not recognize your face, at some point they won’t even respond to your presence. But they do feel the love of the people that come in and have warm feelings for them. Too many times I have seen patients that are described as catatonic in homes, only to find that they truly aren’t – rather, they are neglected. I think with an illness like this it can sometimes be difficult to see the human being, the soul, inside of the deteriorating shell. Particularly in the advanced stages. It’s like looking at the shadow of someone you used to know. I think your friend’s husband needs her. Being put into a home and basically left to your own devices is a very sticky situation, even in the very best of nursing homes. The majority of them are understaffed and in all of them the staff is underpaid. Most people don’t go into work every day hoping to neglect their patients, but in far too many cases there is no choice. It’s a sad state of affairs, but the patients (especially those that can not speak for themselves) need their families and closest loved ones to advocate for them. Abandoning him now, I feel, would not be the right thing to do. I do think she should move on if she feels like she is ready, but I hate to think that would mean she would no longer devote any time to her husband. It is true what the others have posted above, the vow is “til death”, and not “until you are too ill to be a spouse.”

I wonder if your friend is TRULY ready to move on. I can’t help but think that she may be overwhelmed and depressed, as this is a very heavy circumstance to have to carry around every day, and she is looking for an escape. An outlet. Has she seen a therapist? It might be good to talk to someone about what she is going through.

There have recently been studies done that show that full time caregivers, or those who are dealing with a close loved one with a terminal illness, have a shorter life span. The stress of having to worry each day “is this the day?” truly wears the body down. You should remind her that she can’t take care of him, or anyone else, if she doesn’t take care of herself. And that includes letting loose a bit. If her family can’t understand that, that’s their issue, a tragic one at that.

rooeytoo's avatar

If it were me, I would stay married and do the best I could to be there for him. But if he is in a home, life does go on and eventually I am sure I would reach the point where I would want more. I don’t remember where I heard it but a phrase I will never forget is that “the grief doesn’t get smaller, life just gets bigger.” I think that is what would happen in a situation like this and until anyone has walked in her shoes, they should not judge.

mea05key's avatar

I think in reality, especially if the couple is young, the person will find a new partner, cannot expect to waste another 50 or more years with someone that cannot remmeber even his/her name.

ANef_is_Enuf's avatar

@mea05key Alzheimer’s is a progressive and fatal disease…. “wasting” another 50 years is not a likely possibility.

chyna's avatar

It would be interesting to know how the husband’s parents would react if it were the wife with alzheimer’s. Would they encourage him to go ahead and “live his life” or insist he stay with the wife? There is no way of knowing, of course.

JLeslie's avatar

@breathe I see. Thank you for the clarification. You say she is afraid of what her family would say. Her family? Her side of the family? Not his side? Or, she means everyone? I can’t imagine the family would not understand her going out with friends now and then. Is it possible that she is projecting that feeling onto them, and actually they would be very supportive? She may have her own guilt that may have nothing to do with the family. Also, maybe she really does not want to go, and uses that as an excuse so she does not have to hear any flack from other people?

I think it is awful that her friends have basically abonded her. You obviously have been a very loyal friend and care a lot about her. How long has her husband been out of the house?

I still say some sort of group thing for people similar to her. She will make new friends who really really get what she is going through.

breathe's avatar

@chyna The husband only has a sister, and she lives on the East Coast. Basically all he has is my friend. She spends a great deal of time visiting him, and in fact has made acquaintances with families of other patients with the same disease. Now that I think about it, there is a man that she talks to, that has his wife in there. I think they are consoling when they happen to bump into each other.
Actually the way I see it, her parents are more concerned with appearances with their friends, than they are with their daughter. Her husband has been in the home nearly 2 years now. He doesn’t know her a good deal of the time, he yells at her and calls her names when he sees tears in her eyes.
I will definitely find a support group and go with her if I have to. I agree that might be just the thing she needs. After all, what do I know, I haven’t been through anything like this, so I really can’t relate.

JLeslie's avatar

@breathe Do her parents live in the same town that she has to give a damn about what their friends will think? I just don’t see how going out with some friends once in a while is a bad thing or in any way shameful. She is not with him all of the time, it does not take time away from him.

2 years, goodness, no wonder it is getting overwhelming for her. I can’t imagine it, if I really try to imagine it, I just can’t, and I think her family should realize they can’t imagine it either. I say f**k them! Who cares what they think. She should just do what she wants, she does not have to tell them anything. If someone sees her out with friends let them talk, what are they going to do? What’s the worst that can happen? Are her parents going to stop talking to her?

When she gets herself into some counseling she can also work on not feeling like she has to still be obedient to her parents, or worry about their judgment at the age of 40, or however old she is. I don’t mean that harshly, it is difficult for many people.

Pied_Pfeffer's avatar

Let’s recap here:

*This is a middle-aged couple with no children who have only been married to each other.
*The husband was diagnosed with a younger-onset of Alzheimer’s over 2 years ago and is in an advanced stage. He is now living in a nursing home.
*The wife:
– Sits at home crying
– Feels that her life is over and wants to die when he does
– Has absolutely no intention of divorcing him
– Still loves him very much
– Has computer access
– Is questioning her faith
– Is afraid of what her family will say to her (if she goes out, even with friends)
– Has had most of her friends abandon her since her husband went into the hospital
– Hates the loneliness, the quiet, no laughter, nothing to look forward to the next day
– Really wants to enjoy her life and tend to him as well
– Only has one family member on his side, and it is his sister who is not nearby

Please correct me if any of this information is wrong or something is missing.

breathe's avatar

@Pied_Pfeffer I believe you read it correctly. She is so torn between this and that. One day she does this and the next day doesn’t want this or that. I really think you folks suggested the right thing. Support group. I went to one of those one time for pain management, and they are really quite helpful.
@JLeslie The more I talk to you guys, the more I am beginning to think like you. Yes, her parents do live in the same town. Parents are the social butterfly type. They are quit active in the community. But I don’t think for one minute they have even tried to put themselves in her place. I know them and they are not easy to talk to. I think the support group will most definitely push her in the direction of “this is your life” not theirs. I even heard that in my pain management group.

Pied_Pfeffer's avatar

From what has been described, this middle-aged married woman is ruling her own life by what she assumes would be her parents’ preference on how she lives her life in her current situation. Until she talks to them about it, she may never know if she is right or wrong.

It sounds like your best bet is to encourage your friend to seek help. If she doesn’t want to leave the house to attend an Alzheimer’s support group meeting in your area, help her to find one of the many web-sites that offer this service. It would be a good place to start.

As for you dear Fluther friend, please keep in mind that “you can lead a horse to water, but cannot make her drink.”

zophu's avatar

I recommend a book I was referred to by my psychotherapist.

How to Make Yourself Happy and Remarkably Less Disturbable by Albert Ellis, Ph.D.

It isn’t just a “feel better” book. It describes methods for something called “Rational Emotive Behavior Therapy.” I’m not really qualified to critique it, but it looks really good and it’s improved my attitude significantly.

JLeslie's avatar

Oh, I agree with @Pied_Pfeffer that she should attempt to talk to her parents if she is only going on assumptions of what they will think. Not go to them just telling them what she is going to do, but go to them explaining how she has been feeling, and her fears of what they will think if she goes out with some friends. Maybe her parents will see her pain and say the right thing.

breathe's avatar

@Pied_Pfeffer You are so right. Thank you for all of your suggestions. I will work on it with her. @zophu I will definitely check out the book, much appreciated. @JLeslie Yes, that is absolutely what she should do. If she can get up her courage, she just might find out they may back her. I have tried to tell her that, but she is so afraid of something, I can’t seem to find out.
but like Pied Pfeffer said you can lead a horse to water, but you can’t make them drink.
Thank all of you for you time today, I will not waste it.

JLeslie's avatar

@breathe If she goes into some sort of counseling, the counselor might be able to encourage her to have her parents come to a session one time. Some people feel safer talking when there is a third party in he room. I think what kids forget is that parents give advice usually not to control their children, but to help them be safe and happy. Then when a kid is in a bad predicament he/she does not ask their parents for help because they are afraid they will get into trouble, or their parents will be angry. She still seems to be in that mode, afraid to tell her parents. An example would be a teenage girl who gets pregnant and tries to handle it on her own, some parents are a piece of crap, but most rally to support their children.

vamtire's avatar

I would stay with my spouse even if she is disfigured,I would only remarry if she/he dies

JLeslie's avatar

@vamtire What does disfigured have to do with not being able to communicate coherently anymore, having no memory of you, sometimes hating you when he sees you, screaming at you, not able to live with you because he is so disabled? Or, are you just trying to say you would stay loyal to him no matter what?

zophu's avatar

@vamtire Yeah, disfigurement and severe degenerative mental illness are two different things. The person’s mind is lost. It’s their soul that is disfigured, not just their appearance.

vamtire's avatar

@JLeslie @zophu I would try my best to help her and stay by her side unless she tries to kill me

zophu's avatar

@vamtire I’d stick with someone if there was a shred left of the balance in them that I fell in love with. But, I’d imagine that balance would be disrupted by such an invasive sickness. The only reason I’d stick with someone after that would be desperate sentiment.

loisac's avatar

I have been in exactly this sitution. I was 57 years old, healthy and still working. My husband was at home for five years after diagnosis. During this five years, our three children never spent one day caring for their father. They would come home from time to time to visit at which time they expected me to cook and entertain them and their children. When my husband got totally incontinent I found a wonderful assisted living facility for him. I visited him every weekend. I, through no plan, met a man whose Dad had suffered with this disease and we became good friends. It saved my sanity, plus he helped me take my husband on outings out of the nursing home, which I could never have done by myself. My adult children stopped speaking to me, our neighbors stopped speaking to me and life was pretty awful. But I would do the same thing all over again. I see nothing wrong with trying to salvage your life when it is not at the expense of the ill spouse. Just my two cents.

rooeytoo's avatar

@loisac – I think you behaved admirably, those who judge you harshly should try walking in your shoes.

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