Follow
Share

My wife of 46 years has developed what has been diagnosed as probable Alzheimer's. She has a family history of Alzheimer's so this isn't totally unexpected but that doesn't make it any easier. We watched her dad deteriorate for years and are really concerned with what the future holds. We moved to Florida about 3 years ago and were really looking forward to enjoying our retirement and it hasn't turned out like we planned. She is in the early stages and the strange thing is that I'm really the only person so far that she is having a problem with remembering. She knows who I am. She is constantly telling me how much she loves me and never wants me to leave her but she really struggles remembering anything about me. She asks me how I know her daughters. She remembers going on vacations but just doesn't remember me being with her. We have 3 daughters... she remembers them but doesn't remember that I'm their dad. Almost anywhere she's been and anything she has done in the last 47 years... I've been with her but she can't remember it. She'll ask questions, I'll answer them, she'll say that she understands but then ask the same thing again and again. If my life was a movie it would probably be called Groundhog Zone because sometimes I feel I'm living in Groundhog Day and the Twilight Zone. I'm gradually working on convincing her that we need to move back around our family and friends. I really think that it would help her and I know it would help me. Have any of you experienced being the only one forgotten while you have really always been the only one that supported your spouse? That's really the thing that I have trouble understanding. Thanks for letting me vent. It helps.

This discussion has been closed for comment. Start a New Discussion.
One of our daughters is planning to be with us over Easter and my wife is really excited about that. We are getting closer to becoming snowbirds and so far I'm not getting the opposition from her that I was dreading. I feel like we will be a lot better off when we do find another place back home but we have to wait until it quits snowing back there because we've been in Fl long enough that our blood has gotten thin.......haha. All of the advice and suggestions from all of you has been very helpful. I'll be back when I need to vent and get some more help. Thanks again !!
(0)
Report

I like MargaretMcKen's suggestion - make it a "trial" period of sorts. I'm not sure where you would stay - would any of the girls have room for you two or would it be better to stay at a hotel? The reason this sounds good is in the event that it does not work out for your wife, you can return to your own place (I mean REALLY doesn't work out, if she is stressed, feels lost, whatever - it might take time to adjust.) I would hate to see you sell and pack up everything to move and then you might be doubly lost!

Being with extended family might help - she seems to remember the "kids", but it might be that, like you, she remembers them from long ago... If it seems like she will be okay, and fit in with the rest of the family, then try to find a place where you might be able to set it up as close to how your current place is - that way it will seem like home?
We have not crossed this particular bridge yet - as others indicated, everyone has their own path to follow, there is no one road for everyone, which makes it hard for all of us. She still knows me and my brothers, is confused sometimes by my kids, and after 9+ months of begging to go back to her condo, she now talks about her mother (gone 40 years) and their previous residence (sold 23 years ago.) The time will come, we just do not know when. Just keep on as best you can, do not worry about the gaps in memory, just enjoy what you can while you can!
(2)
Report

One thing we must accept some people esp children cannot face the chg in the one they loved & prefer not to come around.
(1)
Report

My mom didn't recognize me for a while, but liked me and was happy that she met me. :) It was actually very nice to be liked even though she didn't realize who I was.
(3)
Report

Yes it will get worse but for now savor every day. Maybe you could tell her you are her new boyfriend? I agree that moving near family and friends is a good idea but only if they will be willing to help. Bless you for taking care of the woman you love.
(4)
Report

Bad Movie,

I will share a conversation my Mom’s Geriatric Physician had with me when I asked him questions regarding Mom’s short term, long term memory. I was struggling with things she was doing, saying, and decisions she was making.

The Dr told me to stop struggling to figure it all out. He told me pathways to different memories are broken. So, it’s not personal that her pathway to the memory of you is broken. It’s random. It does sound like you presently remind her of someone she once knew. It sounds like the picture she is obsessed with is of someone she dearly loves, and did dearly love at the time the photo was taken.

I was one of the last persons my Mom totally “forgot”. But, for a very long time I was someone that reminded her of her oldest daughter.
(2)
Report

Daddy's girls will be so happy and blessed to have you and mama home.

I remember going to see my step-grannie at the NH, she thought I was my mom as a young person. While we were visiting with my step-mom sitting across the table from her, she very sadly said, "you know that Nadeen never comes to visit me!" It was so sad for me but my step-mom said, "it hurt terribly at first but, I know it is the disease and she is always happy to see me, so it doesn't hurt so much now." I was relieved for her, they were a close, loving family and she not only lost her mom to this demon but, was lost to her mom. I know that if you and your wife have been married in this culture for 46 years, you obviously figured out how to make it work and to love one another through all the trials that come with marriage, you are so blessed that you have that legacy to leave your daughters. Take care of you as well as DW on this journey, it doesn't have to be a horrid awful journey. Keep your sense of humor and tease and play with her to help her keep hers.

Traveling mercies and God's Grace to you and your family.

My Dr said you can be who and whatever you want to be everyday, who are You? I'm Fred and I'm an astronaut.  Wow! I guess his point was to not get sucked in to the disease and the pointless struggle to make them remember. 
(3)
Report

My Mama is somewhere in the middle of dementia. Everyday is Grounding Day. My Dad died 6 years ago and they were married for 50 years. Most of the time it was like he never existed. She hardly ever asks about him until now 6 years down this road. She seems to be back in the 1940's and early 1950's. I am finding that it takes a village to run this show. I think you need to be back with YOUR village! Sending you Grace and Peace.
(3)
Report

What a great husband and dad you are! I bet your daughters can't wait to have you back in the area. It will be a plus for them as well as for you.
(3)
Report

Thanks everyone ! Yes....She is in Aricept and Namenda. I used the term "early stage" because it was just recently diagnosed. I've noticed some small changes in her over the last couple of years but didn't consider it a big deal. The big one hit about 5 months ago when it all of sudden became obvious that there was a big problem. Out of the blue she asked me how I knew our oldest daughter. Needless to say that took me by surprise. I almost had to force her to go to a Dr but she realized something was seriously wrong and went. After cognitive testing, EEG and MRI........here we are today.
Our kids and friends are all fully aware of her condition. We have 3 daughters and they are all "Daddy's Girls" so they will be there for me. I'm having some good conversations about us becoming "snowbirds" and my wife seems to be receptive to that. I know we'll be fine and I also know that I haven't seen anything yet 😔
(4)
Report

Has your wife been put on any Alzheimer's medication? That might help for a time. One of the first things everyone notices at the beginning is the act of repeating the same questions over and over. Also many alz patients learn how to appear as if they know people and what they are talking about. Such as "Oh, I am so glad to see you" and "I just feel so blessed to know you and your family are doing so well". No names or places, etc voiced. One thing you need to consider is what moving her will do to her already fragile mind. Trauma, such as breaking a hip, and moving do such damage to their minds. The truth is she is going on a long, difficult journey, and she's taking you with her.
(2)
Report

likeabadmovie: Your situation sounds identical to my late uncle's. My late mother's sister and he decided WAY TOO LATE to move to Florida. It was a horrific parting of ways for my mother, who was already a widow, and her sister. AND my uncle had cancer...the worst kind, multiple myeloma. He and his wife moved to Florida, they BUILT A HOME THERE, and he died 2 months later! That left my aunt all alone in Florida. Yes, it would be wise for you to move closer to family.
(2)
Report

Your problem sounds heartbreaking, and you are doing a great job to cope with it. However before you decide to move back ‘home’, check it out carefully. You don’t want to find that yet another move doesn’t work out as hoped. Explain the situation fully to your children and other family. They were OK about you moving away, and their lives will have changed. Moving back will put more pressure on them. What can you expect them to do? What problems do they foresee? And how about your old friends? If you can’t leave your wife alone, will you be able to pick up old friendships again? Are there other resources available when you move? It might be worth thinking about a daycare centre from the beginning, so that you can have enough time to yourself to re-develop your old life, even if it is called ‘volunteering’ and you start it together.

It can be a double heartbreak to find that a ‘solution’ to a problem doesn’t work out. It is worthwhile checking the proposed move out carefully, so that everyone that you are hoping will help, is actually willing and able to live up to expectations. You and your wife are both coming back with a different situation than when you left. At least Groundhog Day started from the previous morning, not three years on! Things are more difficult now, and are likely to get even harder. It could be wise to plan for the future, using your time while friends and family are still in the early stages of being helpful. It would be good to find paid supports that you can develop further when and if you need them.

At least let people back home know about the whole situation, in more than one tactful letter. It’s easy to think that it will all be obvious and people will be bound to help. Make sure that they and you are being realistic. It will be the best step to making sure that things work as well as possible.
(6)
Report

After my adopted Mama developed Dementia, she was in a NH. She complained that her husband never came to see her. But he was there every single day, sometimes twice. She wasn’t sure who the guy was that visited, but he was awfully nice.

It’s part of the dementia for some and it may never change, sorry to say. It’s best for her if you can live in her world, because she will think you’re crazy if you try to convince her of the truth and the real world.

Best wishes for strength during the trying times to come. I agree it would be best to move back home where your support group is. That is more important right now than her wishes.
(5)
Report

likeabadmovie -- there's an official diagnosis for that "stubborn streak" -- ODD. Oppositional Defiance Disorder. :( You are a saint for having put up with this difficult situation for so long. So few men do. It's typically women who are the caretakers. Thank for you giving me confidence that there are some good men out there! :) And I agree that you should move back to be closer to family and friends. So few of our lives turn out as we had envisioned....
(3)
Report

I agree. Don't put off the move. The further into Dementia she goes the harder it will be. She will become incontinent and that alone will make it harder. She will have difficulty adjusting no matter what stage she is in. And, you will need to tell little white lies to keep your sanity. When u make the move, just tell her it's a trip to see the family. Time is no more. One day goes into another. She will not know if she has already been there a week or two months.
(4)
Report

I would move ASAP. If family and life long friends are around her she will be able to talk with them about times together when she stops remembering what she did with you yesterday. I know how it is when dreams of retirement disappear but you will need those long time friends to vent to and family to help sooner than you think. Have the children act excited to have you moving back so it is more positive for her. You are a dear husband and she loves you. Let others help in this journey. Let us hear how you are doing.
(4)
Report

I'm in a similar situation. The wife and I have been happily married for 66 years. She has been diagnosed with dementia and has been in an AL/memory care facility the past 10 months. During our marriage we've done hundreds of things, lived in many places during my army career, and shared many memories. Yet she remembers almost nothing of our life. I visit her often and she is always happy to see me, but I suspect she sees me as someone she recently met and fell in love with. She never calls me by name or by any of our pet names.

Before being placed in the AL/Memory Care facility, she went through about 4-5 weeks of a combative stage, but I was the only target of her hostility. This, even though we had enjoyed a happy life together. Doctors and a psychiatrist tell me this is not unusual.

She seems to remember her close friends more than our life together. I'm just thankful to accept the fact that she is happy to see me and enjoys my company when I visit.
(7)
Report

I am 63 yrs married w hubby alz. 11 years ago diagnosed. I relate to all you said. Go where you feel best. You may find friends disappear as they don't know how to visit w your wife nor understand her world she's in. (Can't make changes) Get help to come be w wife so you socialize. Don't put yourself w/O friends. You can't chg your wife but constantly tell her she is safe & you will never leave her alone. That means you get a caregiver to come be w her so you can go have time w friends or just have coffee somewhere. I got the Dr to prescribe anti depressant for hubby (always in chg) he chgd from lion to lamb. God be w you on this journey.
(4)
Report

I am so sorry. It is difficult to face that you've probably been the ground hog for most of your life without recognizing it. Usually when things seem to be ok we fail to see the cracks and are shocked when the roof starts leaking. We women are far more likely to talk about our feelings but there are many men who are feeling the pains of being a care-taker but don't talk about it. The recommendation to talk to a social worker is a good one. One of the most successful therapy groups I had during my career was a men's group that lasted for years (not the same people). Even having breakfast with one or two men who are in your situation once a week can change your life. Moving--consider it carefully. Going back may not turn out as you hope. As to lying--sometimes that is the best you can do--your wife won't remember anyway. A fellow groundhog.
(4)
Report

Can your family help with the move? Maybe one of her children 😉 can tell her that they need her and want her to move closer. If she has been "allowed" to make all the decisions, this might help get the move done.

I would suggest a family meeting. Get everyone up to date on mom and clarify what you can expect in way of help. Be honest and tell them what you need help with, what your expectations are if you move. I would hate for you to have the disappointment of no help, or help that is not helpful. As a daughter, I know that if my dad would have been honest with expectations it would have saved so much heartache and hard feelings. You are obviously a super guy and probably would be appalled at what my dad did, I just think that full disclosure all the way around, helps in these difficult situations.

May God bless you and your family on this difficult journey. You are a man that all women wish they could have, take care of you during this hard trial. It is very easy for the caregiver to get lost in the caregiving and not take care of themselves. Hugs to you and your wife.
(5)
Report

Lieabadmovie- It doesn't sound like your wife is in the early stages of Alzheimer's. If she has forgotten her past with the most significant person in her life, I think she's somewhere in the middle stage.


My 81 y.o. mother forgot everyone, except me and my family whom she lives with, her son, and her siblings. She doesn't remember any other relative or friend, even her best friend since childhood. I showed her pictures of her from a few years ago, she has no idea where or why she was there or what she was doing. At the moment, she can take care of her own hygiene needs. Knock on wood. I hope she can keep doing it.


It's better if you move back closer to family and friends. Hopefully they will help you out. Her condition will worsen and you will not be able to help her by yourself. Don't leave the decision up to her. It helps if she agrees, but you need to be the one in charge.
(4)
Report

I have been a care giver since my middledaughter was 15. she developed non hodgkins lymphoma and my husband could not face it and wound up going into a psychiactric unit in a hospital. thay meant going to see my daughter in the hospital and going to see my husband. there was no one to help, now my daughter is fine and my husband is in a nh for sub acute.he is 84 and for some reason could not get homecare for him. he is on medicare and Medicaid no one is helping. this is all catching up with me, bad hip, bad back, leukemia and no one to help me.
(1)
Report

Farmjelly
Do you have my house bugged ? Just kidding of course but everything you said is happening. She will look at old pictures of us and ask if it is me....I tell her it is.....She says she believes me but I know that she really doesn't. She's almost obsessed with one picture of use when we were 18 and looks at it all the time. She talks about trips we have taken and when I tell her that I was with her she looks confused. I struggle with just how much I should try to get her to understand but I've never really lied to her and don't really want to start now but sometimes it seems like it would be easier to just agree with anything she says. Sundowners is starting to become more prevalent now too. Fortunately she sleeps through the night and always goes to bed before me so I do get some wind down time. I am making some progress in discussing the move. Baby steps !! Thanks for the support.
(10)
Report

Bless you. It sounds like you are a patient, thoughtful husband. I agree with the above advice about moving closer to family and friends. You will need all the help and support you can get in the coming years.

As to your wife not remembering you being with her in years past ... YOU weren’t there. And by that I mean, the way you look now, YOU weren’t there. She may be remembering you the way you USED to look. Her mind may not be able to reconcile the younger you with the older you. If you show her old pictures of you with your children, on family vacations, etc., does she recognize the man in them as her husband? If so, you may have to explain (again and again) that he’s you, but you’re older now.

And, yes, you will have to answer the same questions again and again. It does get tiresome, just stay patient. While it’s the 10th time you’ve answered the question, for her it’s the first time she’s asked it. Have you read “The 36 Hour Day”? It’s a great resource for caregivers.
(11)
Report

Thanks for the kind words of support. Right now it is just her and me. The rest of our family and lifelong friends are about 700 miles away and we really don't have anyone else to rely on......but right now... that's OK. We got married at 19 and been through a lot of good times and bad together so I'm not about to give up now. My wife has always had a little stubborn streak and never wanted to be told that she had to do anything. I guess that's one reason we've stayed together so long..... I've learned to let her think that she made all the decisions.... hahaha. She is still able to take care of her everyday needs...... it just the memory. I have to tread lightly in convincing her to consider moving. I do have the support of our kids.....even though it's from afar for now. I've read a lot of stories on here and I really don't have it so bad. I feel for all of you. Thanks
(10)
Report

I am so sorry. I so agree with those above recommending you to go to family and friends. It's not all about your wife. You matter too. Honestly, it's going to get harder and you have to protect yourself by surrounding yourself--and her too--with people who love you both.
(7)
Report

I would say definitely get back near family and friends. It sounds as though your wife's reasoning abilities are no longer in the normal range. I haven't heard of a situation like yours, where your wife is "losing" you in her life story. That has got to be heartbreaking for you. I would start reading Oliver Sacks' books - he was a neurologist who wrote about unusual brain conditions. One book is "The Man Who Mistook His Wife For a Hat". He also wrote Awakenings, which was made into a movie with Robin Williams.

I am so sorry you both have to go through this. {{{Hugs}}}
(10)
Report

This must be a very heartbreaking situation. I do feel for you. It's great that you are reaching out for support. There are ways to do that online, so you can read about what others have done in similar situations. I might also try to get some other in-person support too, if time permits.

I think that if you feel you need to be near family and friends at this time, I'd consider doing it, before your wife declines further. While her wishes are valid, she may not fully appreciate the resources and support that you will need for her as she progresses. I'd have to make the call and do what you feel is right and practical.

Please post about how things are going. Do you have any help with her now?
(11)
Report

Dear likeabadmovie,

I just wanted to add my support. I wonder if you can talk to a social worker and see if there are more community supports that could be accessed to support you and your wife. It is so hard for one spouse to see their life partner in this situation. If anything, I feel the more family and friends that can lend their support the better.

Please know we are here.
(7)
Report

This discussion has been closed for comment. Start a New Discussion.
Subscribe to
Our Newsletter