My dad came to live with us (myself, my husband & 23 yr old son) 5 months ago, after my mom passed away. He is 84 and in mid to late stage of AD. The last 6 weeks or so, my dad slips into a delusion in which he thinks I am his wife. This usually happens in the evening, during his Sundowning period. Try as we might, we cannot get him to understand that I am his daughter. He thinks this is "our" home and that my husband and son are visitors. Usually around 9pm, he starts trying to kick them out. He gets very agitated when we try to explain that we all live here. He accuses me of taking in boarders without asking him first. When I've tried to explain who we all are, he will sometimes think that my husband is my first husband but I have divorced him and am now with married to him. He can't understand why I would welcome my ex into our home. He gets mad at me when I won't go to bed with him or gets up several times to see why I haven't come to bed yet. We have even had a few nights where he actually cries because he thinks I am either mad at him or sleeping with another man. My husband has been a good sport about this, sometimes sitting out in the garage until after Dad has fallen asleep. But it is now cold out and I don't expect my husband to give up his home in order to keep Dad calm. My son has also been very good to his grandpa, but it is hurtful when he says mean things to them and acts as though he has never seen them in his life. They understand that this is the illness, but it doesn't mean it doesn't hurt them. I am no longer bothered by the fact that Dad doesn't recognize me. I can accept that he doesn't know I'm his daughter. And if he thought I were a nurse or his sister or mother, I could play along. But we are at a loss as to how to handle this. We cannot live in his reality and play into this storyline! This is definitely not one of the things that any of us anticipated having to deal with. Has anyone else had this problem? Any suggestions for us?
I just have my mother, so I haven't experienced what you are going through, but mom has forgotten many family members. We keep a picture on the wall of my father, and mom will point to it say do you who that is (like she's quizzing me) and I'll say that's you're husband and my daddy. I used the above night time routine with my mom, I'd say it was time to go to bed, she'd crack her door and tell me she was ready (when she had her night gown on). I'd give her her meds, help her into bed, tell her I loved her, kiss her goodnight and turn off the light. She liked the routine and started just getting up and saying "I'm going to bed and I'd say okay let me know when you're ready for me to tuck you in." Kind of role reversal. Good luck to you, my advice is keep it simple.
"Marriages" often form in care facilities between two people who think they are each other's spouses and it 'works' for them. Often it is painful for a living spouse who diligently cares for and visits the AZ patient, but there is an interdependence for the patients that does offer comfort. Perhaps having him somewhere close by where you can monitor his care and visit him would really be, in this case, the best thing. Anger is or can be a huge issue with AZ patients. I think your marriage has to come first and it sounds like you have a very good husband. God bless you both.
Is there something you can distract your dad with - a favorite food or activity? It sounds like your father's "obsession" (for lack of a better word) is currently very intense, so it would probably be hard to just distract him, but it's worth a try. If that doesn't work, you might try buying into his "reality" and devise a "story" of your own that fits into his reality without meeting what he expects of you. Did your mother have any sisters? You could use a "therapeutic lie" - tell him his wife is away visiting her mother, and you are her sister who looks a lot like her, come to visit and look after him while his wife is away, and his wife would be very upset if you went along with him. If she didn't have any sisters, you could be her aunt or cousin. Your husband and son could be "visitors" like he believes, and they are having car trouble and need to stay the night. If he accepts that, you could use the same story every night. If not, they might have some more urgent need, like they are staying with us while their mother is in the hospital, so they won't be alone at a time like this and they can visit her more because the hospital is nearby, and they live far away.
How long has this particular situation been going on? It might fade away over time, or be replaced with a different theme. My mom had a bizarre fantasy when I first moved in with her. She told me that she was taking a walk recently and was suddenly surrounded by a bunch of teenage boys and felt terrified. This boy who she said lived across the street (i never saw any teenage boy anywhere on our street) came along and rescued her and kissed her very romantically, and the other boys all mocked him and she walked away and came home. She had that one for several months and always wanted to go over to his house and try to find out what was going on between them, and was terrified that those other boys were hanging around and would attack her. I was new to this whole thing, and tried to use logic to change her thinking, with no success. I think the only thing that helped was to look around the house and out on the street and show her there was no one there, and that I would protect her if anyone tried to hurt her. The whole theme just eventually faded away, I think it was replaced with another one, like, out of the blue, "are you ready to go? we are going to be late for work!", or, "we have to go to that place, they're waiting for us!" and pacing around the house till I finally got "ready", and we would go out to the car, and as soon as we got in, or after we had been driving around for a few blocks", she would say, "Where do you want to go?" This would happen a couple of times a day, sometimes we would get home and eat lunch and then she would say, "Are you ready to go?" and drove me crazy because I couldn't get much done, and she would become hateful if she didn't get her way right away, and pace from door to door, banging and kicking the doors and asking me to help her open them (I had "childproofed" the house so she could pace around the house and the backyard but couldn't get out on the street and wander away and get lost) over and over again, sometimes all day, if there was something I had to do and couldn't leave the house all day (those were HELLISH days) but in general it was a relief from her other fantasy. Then that was replaced with a similar one, wanting to go home to be with her mother and father. I tried again to use logic (they would be 130 and 140 years old if they were still alive) but she would just get angry and tell me I was lying, or if she believed me, the grief and gut-wrenching sobbing that she experienced was as strong as if it had just happened, and it just tore me apart. That's when I started thinking of "lies" that were better than all that pain. I began telling her that her parents were on a long driving trip to Mexico to revisit all the places and people they used to see when they went on trips there before. She would be disappointed but happy for them because they were having such a good time. That worked for months, until she INVENTED up a whole new set of parents! She began telling me that she wasn't talking about THOSE parents, she wanted to go see her "OTHER parents". Telling her that no one has four parents did no good (when will I learn!). The only thing that placated her would be to drive her around a while, "looking for her parents' house" and she had to give me directions because I didn't know where they live, which usually only lasted for a few blocks before she either forgot why we were driving around or could not give me any more directions, at which point we would just keep driving around enjoying the scenery, or go out to eat or to a movie (we have two good "one dollar" theaters in the area, so we can do this a couple times a week) or we would go grocery shopping or run other errands together. (DUH! I FINALLY figured out that all she really wanted was to get out of the house. I'm a bit of a homebody and enjoy puttering around the house, so it took me a while to figure that one out!).
Ireese mentioned medications. I had pretty much given up on any medication helping, but Mom's doctor added one more, Risperidone, to her other dementia medications and so far it has helped with the mood and agitation and pacing, so we don't have to drive around SEVERAL times a day, and we even don't have to drive around EVERY day, and it is easier to redirect her or distract her.
I guess my point is, it might help you to know that your father's current "obsession", for lack of a better word, might fade with time, or it might morph into something else you can deal with easier, and you might, in the meantime, be able to figure out a "story" that gets around your father's false ideas with a minimum of trauma and arguing, and that helps him to go to bed and gives you and your husband and son some peace as well. And it might help to, as Ireese suggested, to have her doctor adjust or add to whatever medications she is taking now.
Well, mom wants to go "somewhere" now, and has been very patient so far, so I guess I better stop writing now and get up and go! I hope this helps you deal with your very difficult and perplexing dilemma!
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
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....
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.
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!
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!!
Bless you
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
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.
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.
Hugs
RR
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!! =)