Help! My Dad thinks I am his wife!

When I saw an email to notify me that someone had added a comment to this post, I had to stop and go back and read it through again. November 2012 (when I originally wrote the post) seems so long ago..........

Jet200, I think you would be doing the right thing by trying to get the appropriate level of care that each of them needs. It may be very difficult for them at first but it will be even more difficult for your dad to heal properly and get the rest he needs while coping with the constant stress of your mom's confusion.

I lived about 100 miles from my parents before my mom passed and dad came to live with us. The last year of my mom's life, she was plagued with chronic health problems that I now realize were undoubtedly made worse by the stress she was under with my dad. I visited 3-5 times per month and they were still able to hide a lot of it from me. It wasn't until she was gone that I realized how hard it must of been on her.
I wish the best for your parents and for you!

It is a little after 2am, and I am sitting in the library at the seniors home typing this post. My parents were in the midst of moving in here when my father became ill, and wound up in the hospital with heart and a multitude of other issues. I promptly came out 2 days later to help my folks out. I live in New England, my folks live in western Canada. Their house is sold, and I am trying to help my mother settle in, and make the apartment a home. The first couple of nights were OK, but tonight she began to think that I am my father, and the time line went back to when they were courting. She told me that her parents would be back soon, and I had to leave. When I tried to use logic, she became agitated. The ironic part was that she angrily called me by my name, but still confused me with my dad. It was a surreal combination for me. Instead of arguing, I left the apartment, and began researching to see if others have been in the same situation. It gave me great comfort to see this thread. I will not say "misery loves company", but the challenges we are enduring are partially mitigated by the camaraderie we are sharing. My father will be released from hospital soon, but given his current state, he would not last long if he has to endure this type of situation. I can not stay here long, and relocating them to my neck of the woods would not be possible. I have 2 patients to deal with. I think that it may be time to move mom to more critical care, and give my dad some breathing room to relax. I will see if they can still remain in the same facility, but apart. I need peace of mind as well.

OP, I feel your pain. My mother-in-law thinks that my husband (her son) is HER late husband. I know she has dementia but it still drives me nuts every time she says that.

It is said that one person with dementia will keep 20 people busy. Your experience proves it.

Despite difficulties in doing so, it may be time to have dad put into a nursing home...

If you choose not to do that, or if you simply cannot do it, you may want to try this ruse..."Yes, we used to be married but you divorced me two years ago and so I now have a new husband." (I expect I will receive brickbats for saying that, but I only am "saying" not really giving advice...sort of any port in a storm type thing.)

I empathize with you.

Clare, when Mom and I cared for her dad over 20 years ago, he would ask us 20 times a day "where is my wife?" Sometimes he would say your mother or my mother when the right words wouldn't come. We would remind him over and over that she had died and he would grieve all over again every time. We were at our wits end, but there wasn't much info out there on how to deal with dementia back then. Now Mom is the same way and I have learned to redirect her attention to something else when I know the correct answer will agitate and confuse her. I also find just giving generic answers like "really", "sure", uh-huh" is just enough to satisfy her. Remember that they can't remember from one minute to the next, so telling the truth can do more harm than good.

It sounds to me like he needs to move into a nursing home or a memory care facility. At some facilities they have specialists who can work with the residents, to help them with their memory loss.

Your husband and son have to live there too, and it sounds like that would be hard for anyone to take. You have to live there, and it sounds like too much for you to take!

Thank you Kabeena, Bookworm and Clare49, I do believe we are setting a great example for our families and friends, unconditional love. Pats to all of you on your backs!!!! Remember, when it gets tough, sing! lol

Thought I would let you all know that my dad hasn't referred to me as his wife for a week or more.... to be honest, he just doesn't know WHO I am. Any of us, for that matter. But he seems to trust us when we tell him who we are, show him pictures and assure him that he is safe and loved here.

Also, my husband is spending more time in the house with us, but I actually think he likes being out in his "man-cave" and sometimes my dad is just an excuse for him to go out there! He is a guy that like's his space. It's heated and has cable tv, so it's not like he's sitting out in the dark in a tool shed!

Reserve, doesn't it make you so proud of your son to see his compassionate side? And it is just wonderful that his gf is helping too! My son also has a gf that is very kind to grandpa. The other day I was at work and my son was with my dad. When it was lunch time, my dad was reluctant to go to the kitchen because he wasn't sure who my son was. His gf came over and asked my dad to join her for lunch and he got up and went right to the table. (He is much more comfortable with women!) She sat and had lunch with him and put him at ease. It made me smile.... Compassion is a quality that seems to be on the decline in our society and it makes me happy to know my son is with someone that possesses it!

Reverse- Wow, you are so blessed to have such a wonderful son, and on top of that you are getting a wonderful daughter-in-law! Makes me happy to hear about such goodness. Thank you!

Foredelicastle -- I don't know what you wrote but ... this is a Public Forum. Everyone has a say. If this is based on YOUR personal experiences, then I don't see why anyone would object. I have recently experienced with this by saying something and was "verbally attacked" by others. Unfortunately, it also got other posters to "verbally defend" me. I went to AC admin and asked them to delete My Comments because it was causing division among the posters. As other posters kept telling me, this is a Publin Forum and we all have a say - as long as we dont' Attack other people or Tell them what to do. We can suggest or bring up what helped for us. I have learned to be more careful with what I say - most times.

Fordelicastle -- from the comments that is still here on AC, I did not find anything wrong. We each have a choice - parents stay at home vs. Nursing home/Assisted Living. Each of us have a Limit before we want to have our parent move to some form of assisted living. And some do Not Have Limits and can care for that parent to the end. We each need to base on what we can do. As for myself, if we had the funds, one parent would definitely go to assisted living but in reality, the one parent I would love to go - would not be the one chosen. Anyway, the point is moot since we have no money to send either one. So, I just do what I need to do. Too bad with 7 siblings, only 1 is helping me physically with the parents.

Foredeli - please come back to AC if you are still caregiving or still suffering from the effects of caregiving. I have read over and over on this site, that just because parent is now in NH or AL, the cg is still suffering from Post Traumatic Stress.

Reverse -- I am sooooo glad that your son and gf are helping! I have nieces/nephews of that age living just next door to us. Bro and his wife, too. I have no help even though I have asked and asked. Since I came on this site, I have learned to Accept that every person (siblings) have a right NOT to help. Since then, I don't have so much anger and resentment towards the rest of my siblings. But, I am soooo glad that my visiting nieces do help suctioning mom when they do their weekly visits. Yep, you have a pretty good son!! =)

Claire49, Your house and family sounds exactly like ours!! We spoile Mom and we sing at supper to her, especially the old songs and Christmas songs. Some nights her arms and feet start to go and she is so happy it brings us all to tears. Big hugs to you, we are in the same boat and my son, who is still here also, is such a joy to my Mom. He wont let her go to sleep without giving her a big kiss and trying to make her laugh and he now knows how to use the hoyer lift and helps us out with that . He and his fiance even gave us a few weekends to go away and cared for her, diapers and all, pretty good at 26 if I must say so. Keep holding your head high girl!!

Kabeena, this just a normal stage. For us, it worked out well because my Mom thought my husband was her husband and he held her hand every night during supper for maybe a year. My Mom went through the aggitation, sundowners, and wandering stages too and its so true that you can not reason with them when they are in that mode. (Keep all the doors locked up high) If you want to, we ended up putting Mom on depakote sprinkles after a year for her aggitation. My sweet little Mom was trying to jump out my window!! It was a life saver for us. Once on them the anger and aggitation stopped. Hang in there, its just a stage and they are so worth it, this too will pass.
Hugs
RR

CLara, you sound like a wonderful daughter, mother and wife and I am sure you are making the best possible decision for your entire family. None of us, myself included, should tell you what is best because how could we know-like you said -each situation is unique. I think you sound lovely. And your husband and father and son are blessed to have you in their lives.

Amen, Clare49! What a blessing that you were all there to enjoy that gift! It does my heart good just to hear about it.

I think all situations are unique when it comes to Alzheimer's. The relationship you had with your loved one before this disease invaded your lives has a lot to do with the commitment and passion you put into helping that person. As I have said previously, my dad was a great dad and family man. He sacrificed alot for all of his family (including our spouses and children) and so helping him in this final chapter of his life is a no-brainer.

Obviously, I am sure Fordellcastle is rolling her eyes and will always think of me as selfish and self serving. She will not believe me when I say that my husband is an equal partner in this journey or that my son is cool with Grandpa living here. (On a side note, my son is 23 years old and has his own life. Won't be living here much longer anyway. And we don't expect him to stay just for my dad.) But the fact is, we didn't enter this journey with blinders on. And we aren't going to give up the first time something happens that we weren't planning on. For goodness sake! In my opinion, it would be much more selfish of us to place him in a NH just so we could get back to our lives.

Last night at dinner, my dad was so "with it" that we were all amazed -- I think even he was a little surprised! We had great conversation, talked about my mom, our lives, and just took a little time to enjoy each other's company. Those little pockets of time, when we get to see the real man again, are what energizes us and gives us the strength to keep going.

Good luck to all of you! I hope you are all able to find peace with whatever decisions you make for yourself and your loved one.

Fordellcastle- you story seems sad. I am sorry you have had such grief in yur life. Alzheimer's such a horrid disease. My grandmother had it and I worked in a nursing home years ago with many residents that had it. So hard. We all just do the best we can. I do not know why your post would have been taken down- I do not think you are saying anything bad. I just wanted to stress that I was coming from a short term solution.

I realize placement in an ALF or nursing home can't happen overnight. Plans need to be made, though. It is going to get worse-a lot worse. No one who has lived through watching this cruel disease ravaging their loved one would want to live like that or put their family through the pain of it. My background is different from many of you. I loved my Dad dearly, and he had a brain stem stroke which resulted in dementia of a sort. He did not want to go on living like that. I love my Mom, too, despite everything. Caring for her is what my Dad would want, and I do my best. She is stage 4 now. She will go to a Memory Care unit, as my aunt did for a short period before her death. I am a strong advocate for living wills, and indicating alzheimer's/dementia as a terminal illness for which I do not want treatment/medications to be continued. I have said before-my message was evidently reported, and will no doubt be reported again-my aunt (Mom's sister) had Alzheimer's. Her living will stated just that, as does mine. She had witnessed her Mom's 'living death' as she termed it, and could not help care for her. She and her husband refused to put their family through it. Watching our family disintegrate from a distance was too much. I guess I want people to know how horrible this disease is, and the damage it causes not just to the victims of it. There is a difference between quantity of life and quality of life. I'm a helluva lot more scared of living with Alzheimer's than being in a nursing home or dying. Life is for the living. It goes way too fast, and these are years with your husband, children, and grandchildren you will never get back. I could never be that selfish and put my daughters through it. I won't post again.

fordellcastle- yes, and in the mean time? What should she and her husband and son do while waiting to get into a nursing home? They should just abandon her in her hour of need? I certainly do not think dressing in a scrub top a permanent answer and I am sure Clara does not expect her husband to keep going out into the garage- sorry Clara if I am putting words into your posts- but it seems to me she wasn't going to be able to just up and get her Dad out of the house that fast-unless I am missing something . I pictured her THAT NIGHT having to deal with her Dad crying and begging her to sleep with him and I tried to see how it could be helped for that very night. Not a solution to the overall problem but a way to handle the nights until she could get an overall solution.

Good thing she said her Dad has stopped his behavior. I hope that continues and do agree that it may be time for assisted living.

True.

If you ask your husband and son to come home after a long days work and play 'dress up' as health care workers, then send your husband to the garage, you need to do them both a favor and get some serious family counseling. Don't be surprised when husband and son pack up and leave to make their home elsewhere. It is the sanest, healthiest thing for both to distance themselves from this situation. If Dad were in his right mind, would he want you to be destroying your marriage for him? Okay, toxic parents would, but the normal, loving parent would say your marriage and son come first: "I've had a long, wonderful life. Don't sacrifice yours for me."

This is about the most challenging caregiving situation there is. If this is destroying your family it is time to place Dad in a Nursing home. Hard and cruel as this may sound it can go on for years
Try to keep a simple routine and put away decorative items around the house. Place a few items around and in his room that remind him of long ago. Old photographs or maybe things he or his wife made. Make his bedding old fashioned, similar to the way it was when he was younger. His vision is probably poor so if he needs a clock or watch make it a big one. Sometimes an animal can be a big comfort especially if it resembles one he had in the past. TVs etc can be very disorientating as is constant noise. If he loved music keep it playing softly. When you approach him identify yourself. "Hi Dad It's Mary your daughter" or "Hello Gramps it's Billy your grandson" personally I think the idea of playing Drs and nurses will only confuse him further because on some level he does recognize you and in the back of his mind there is likely a deep fear of being put in a nursing home.
Often when the elderly are talking about "going home" they are talking about dying not returning to a former abode.
Above all give yourself a break, even if it's just for an hour or two to have lunch with friends,get your hair done, have a massage or read a book in the park.
You can also try lying on the bed beside him for a short while if it calms him before sleep as long as he doesn't think he has marital privilages.
God bless and good luck

Clare49 -I 'm so sorry, I didn't mean to scare you. I just wanted you to know that things can get bad for a while, but they also can improve or change to a different form that is easier to manage. I've been caring for mom for 6 years now. We had a couple of very bad years. Mom was always very generous, loyal and loving, with a quick wit, but also had a somewhat difficult personality - stubborn and contrary and opinionated, and never wrong, all which really came out with her dementia, and she became demanding, selfish and non-compliant, and fought me on everything! Things are better now, partly my own adjustment and figuring out how to handle things better. Like, I used to get so mad when she was noncompliant about things I really needed her to do, one, because she was so ornery about it, and also because I just wanted that particular task to be as easy as it should be and not have to spend all this time trying to convince her and getting so frustrated. Like, taking pills. She would either refuse altogether or take a few and then say, I don't want any more. (AAAARRRRGGGGHHHH!!!!) And I would try to explain that she needs to take all of them, not pick and choose, and try to remind her that the times when we have forgotten and she didn't get her pills, she ended up feeling lousy by the end of the day, but that got me nowhere but angry and defeated. Now, I have learned to just say, "ok" and walk away. A couple of minutes later I go back and say, "Hey, mom, it's time for your morning pills" and this time, she is just as likely to say, "oh, thank you, honey! oh, you are so good to me!" And I walk away, thinking, "heh heh heh, I won that one!" and mentally patting myself on the back. No need to get all worked up and engaged in conflict! Things are also better because my brother has come around and is much more helpful and supportive, and the medications she is on now have helped with her frustration and agitation, and she is much more easy -going and cooperative. And finding this site has been a godsend. It has really made a diference. Clare49, it sounds like you are way ahead of the game, you have a lot going for you already. You have a wonderful father, and it sounds like he has an easier personality to begin with. Your husband and son are with you and they love him and are committed to helping him. They are a team you can brainstorm with to find creative approaches. And you found this site. As difficult as caregiving for someone you love who has dementia is, I don't think you need to fear that your situation is going to be as difficult as mine was for a time. And though there may be times that are particularly trying, they won't necessarily stay that way forever.
Bless you

Clare49 I can see where it would be very tricky to pretend you are a nurse with your Dad. He sounds like such an amazing man. And him asking for honesty from you- gives me a lump in my throat- he might be very upset if he came out of a confused state to see you pending to be someone else. Unless you were honest about that during his lucid moments. Could you talk to him now -explain to him tthqt at times he forgets you are his daughter and not his wife. Just be completely honest with him now and say -" Dad, we went through a period with you when you thought I was your wife and I could not get you to understand I was not. If this happens again I have decided to wear nursing scrubs so you know I am not your wife.". Then if you are wearing them and he comes out of his confusion and wonders why the heck you are pretending to be his nurse you can say " I told you, Dad, at times you think I am your wife and that when that happens if I wear these clothes it helps you realize I am not and you relax. " just throwing out suggests. Hoping one sticks for ya.

That is so nice that you are such a part of your niece's life. I cannot tell you the fear I have about what would happen to my daughter if my husband and I pass away. We do have siblings but out of the 3 we have maybe 1 would step up to the plate. I hope you can find some time to be with your neice again. But I understand how hard it is to find time and energy. Especially during the holidays! Maybe a simple card in the mail would suffice. My daughter LOVES getting mail ( from the mail box-the old fashioned way :0) . And she loves getting photos with the letter. Something tangible to hold onto. Just a thought.

Take care!!

Hello @MishkaM and @Kabeeena, it was great to read all of your ideas. I have actually thought about the scrubs because for a week or two he thought he was at a hospital. But before I got the scrubs, he had quit thinking that so I kind of forgot about it. If he wakes up in the middle of the night and can't find the bathroom or is looking for my mom, I usually address him as though I am a caregiver, offering to help him back to his room or to get him a drink of water. If he asks about his wife in the middle of the night, I tell him that she is visiting my sister for a few days. These things seem to calm him and he gets back in bed and goes to sleep.

During the day, I seem to have a harder time playing along. I'm never sure if he is "my dad" again or if he has daydreamed himself into another place. I feel like if I go along with it and he suddenly realizes that he was delusional (which he does sometimes), it will upset him to know I am not being honest with him. The one thing he asked me for was honesty.

Kabeeena, how long have you been caring for your mom? Do you have any help? You sure have your plate full! Your story both frightens me and inspires me. I can't imagine the road my dad is going down and it scares me. But knowing that there are others helping their loved one navigate that road makes me believe that I can at least give it my best shot.

MishkaM, I have a 35 year old niece with developmental delay. Her mom (my sister-in-law) passed away 13 years ago. I have been very involved in her life and consider myself a secondary/part-time caregiver. Your thoughts on being flexible and creative hit the nail on the head! And now that I think about it, so many of my experiences with her have helped me to prepare for taking care of my dad. To be honest though, I haven't seen her much in the last few months. I just can't handle both she and my dad together by myself. You are doing an amazing job, juggling the needs of so many. I hope you find time to take care of yourself as well. God Bless!

Clare49 I am so glad to hear you are having some peace with your dad. Your husband sounds wonderful! And it certainly sounds like you are taking his needs into account. In fact it sounds like you are all handling things very well! God bless!

Suziesmom- So sorry to hear about your loss! -I am afraid I will probably not be much help to you, unfortunately. My 80 year old Dad is primary caregiver to my mom and very reluctant to share medical facts with me. Though I help him take care of her quite a bit he is not willing to let me go to doctor appointments and when I probe for clarity about the appointments I get vague answers.
She was diagnosed with a brain stem stroke in a very odd way -if you ask me . She had been going to a neurologist for an Alzheimer's diagnosis-she got the diagnosis as they found plaque on her brain and has family history ( her mother) I was the one who suggested she get checked out because her personality was changing-she was becoming very demanding and she seemed to be forgetting things at the time and telling me she would be driving and forget where she was going.This was -heck- 6 years ago. I approached it gently and she qagreed to get screened and hence th diagnosis.- She went on Namanda. Mom and Dad both started to go to support groups for her diagnosis but after a few years of non progression mentally they started to question if she had it. But she had started to regress physically. And started to have trouble talking. Her balance got terrible. So on a trip to her dentist she was telling him about her symptoms and he asked her if she felt like she was drunk all the time and she said "YES!" and he said it sounds like a brain stem stroke. She and Dad went back to the neurologist and to have my Dad tell it he confirmed then that , yes, her MRI did show she had had a brain stem stroke- at some time -no one knows when. I asked my Dad why the heck didn't the doctor tell them this earlier and he was all like "I 'm not sure -but there is nothing they can do anyway..." and dismissed it. Though the doc did put her on blood thinners and she did go to PT for a very short time. The doctor also said it was possible that my Mom does not have Alzheimer's so my Mom went off her Namanda( sp?). She has been off that for a year now and her scans are not showing any progression of plaque so I guesss that is good but I still question this. I see her getting weaker and weaker but her memory is very good actually so I don't know how she can have Alzheimer's. But physically she is getting weaker and weaker and she has a hard time getting her words out-like it is difficult to talk -not like she cannot find the right words. And she can be very child like in her demands( she is 74-75 in Feb) but she has OCD and was so active and now stuck in a wheel chair and dependent so I think she is just trying to gain control where she can.
I try to talk my Dad and Mom into letting me go with them to the docs but my Dad is stubborn. I try and get info from them but my Mom is not good at communicating and my dad is sooooo washy washy!! There is more I would love to say but will wait for another discussion. I wish I could be a better help to you. I do believe there is more going on then just the stroke but they are both not willing to do further tests though at one time her doctor was recommending it. again, another story. *sigh
Please feel free to ask me anything and I will try and be of assistance. I wish I knew more! For your sake and my Mom's. The research I did off the web doesn't seem to match up too well with what I see with my Mom but I do know how misleading and confusing MD sites can be.
Sorry so long. I am a chronic rambler. Blessings to you.

Thank you to everyone who has responded. It is very interesting to hear so many different ideas on how one might handle this crazy situation we have. I'd like to first respond to @fordellcastle.

First of all, I would like to say that I am sorry that you experienced and witnessed so much pain as a result of your grandma living with you when you were growing up. My grandmother lived with my uncle and his family from the day they were married and, although she wasn't in my home, I saw first hand how damaging it can be to a relationship and to a family.

I did not enter into this with the hopes of being "praised as a saint." I just felt a responsibility to at least try to help my dad through this final chapter of his life. My parents were GREAT parents. My dad worked his butt off for his wife and family. He made many sacrifices for us and was always there when we needed him. Whether it was a shoulder to cry on, a bit of advice or just a hug, my dad provided it. In the 31 years I have been married, he became more of a dad to my husband than his own father was. My dad was and still is a good guy.

When my mother passed suddenly, it was without hesitation that my husband and I both agreed that Dad should come live with us. We decided that we would evaluate every 3 months whether or not this arrangement was working for us. Both of us reduced our work hours from 5 days to 3 days per week, allowing each of us to spend 2 days with him. On the day that both my husband and I work, I have hired an old friend to stay with my dad. My siblings have been very good about making regular weekend visits and offering to stay with my dad so the two of us can get out. We understand that we have to make our relationship a priority and, believe me, we work at it. I do not "push my husband out to the garage every night." He voluntarily started trying that to see if it would help the situation.

It is funny that the day after I posted this plea for help, my dad woke up that morning and had pretty much snapped out of it. He still has periods of confusion about what happened to my mom, why he is here, etc. but he suddenly recognized me and my husband. We were able to get back into the routine we had established at bedtime and he hasn't gotten up looking for me or his wife for the last 3 nights. Last night when I went back to his room to tell him good night, he thanked me for everything we're doing and told me he was so lucky to have such good kids. I told him that growing up with a dad like him is why we turned out like we did.

We know that he will inevitably slip away again but hopefully later rather than sooner. And we know that we will not be able to handle this by ourselves. We just hope to have the wisdom to make good decisions for both my dad and our family. If that means a nursing home then that's what it means. But for now, we'll continue to enjoy the good days and try to put the bad ones behind us.

God bless everyone who is affected by this horrible disease....

this is for mishkaM please give me some info on the brainstem stroke your mom had. my husband just passed away and thats what he had, but i don't quite understand it and would love to ask you some questions

Clare49, the situation that you now find yourself in is beyond what can be handled at home and it is stressing you, your marriage, your husband and your son. It's time for your husband to come in and for your dad to go to a nursing home. If a man cannot find peace in his own home, then where can he find it?

I love the scrubs idea. Another thing that might work, is my actual situation. I hurt so bad anymore that I cannot sleep with anyone else in the bed. Try explaining to your father (as we all know, over & over again) that your health means you have to sleep in your own bed & that he has his own bed now. You and your husband just go to bed after he has and/or separately.

Hi Kabeeena - I am so glad you liked my scrubs idea. I was worried it might seem , er, too weird. I can see where it can backfire but I just thought that maybe it would give some quick peace to a desperate situation. I would even say Clara49 could change from daughter during the day to the "night nurse" that helps him get to bed-maybe helping settle down better to sleep.
I think your pretend time with your Mom is lovely. I think you are bringing much joy to her -and found some for yourself along the way. How wonderful! I take care of my mom for a long weekend a month now ( dementia, brain stem stroke) to give my Dad a break but feel that my care taking is going to be increased due to necessity. I have a child , though, with special needs-she is sixteen with a syndrome pretty similar in nature to Down's so I totally get making up your own normal. Though I do not have to play into a fantasy with her -anymore than any child at her developmental age would require-I certainly find being flexible and creative in my raising of her a very helpful tool.
Blessings