My dh was diagnosed when our daughter was 16. It was extremely difficult for her. She is an only child but is very sociable. Went to college and majored in Psychology. Geaduated last year. Always talked about getting her masters but she has not done anything about that yet. She has a boyfriend that is a couple of years older. He is fabulous w/dh. My daughter just doesn't seem capable of being close to dh. By this I mean, she doesn't kiss him hello, speaks to him very little and makes no real effort to see him unless I mention this to her. I see her with tears in her eyes especially just a week or so ago when he got transferred to nh and had a stroke of some sort. He was non responsive to most everything. He has since recovered somewhat and is much better than he was. Yesterday, she met me at the nh and I could tell she was extremely uncomfortable. I try not to say too much to her because I know her heart is broken but so is mine and I believe that everyone has to learn how to deal with the difficult times in their lives. Her way of dealing is to put her head in the sand. She gets short with me if she thinks I am spending too much time with dh. She wants me to have a life. Slowly, I am rediscovering more of a life for myself but I know I need to see dh everyday to make certain things are ok and he is being cared for properly. If it is a particularly good day, we go out to the patio overlooking the ocean and have a very pleasant visit. He still recognizes my voice. I am trying to give my daughter some space with this but I seldom hear from her and I guess I'm feeling like she is walking away from this. I know there are discussions about younger children but I also know this is a little harder. He was unable to really participate in her highschool graduation, college life, boyfriend, college graduation and I fear that she is not interested in marriage because she will miss out on the father/ daughter dance and all that the day brings. How have the rest of you handled this?
Our kids are 39 and 43, with kids of their own, and I know they stay away except for the obligitory birthdays, Mother's Day and Holidays because of DW. They basically ignore her except for hello and goodbye, and it makes me so sad to see that. I can't blame them that much because she can't be understood, and doesn't understand what you are saying to her, so why bother?
we have 4 girls,one lives in Az. but when we lived with her she seldom talked to her dad, the youngest 34 doesn`t go to visit him much she has a hard time handling it, the 2 middle girls go with me at least once a week to see there dad and will sit and talk with him, 1 son has a very hard time seeing his dad in this state will see him when i sugest but not on his own , 2 older granddaughters only saw him once since he is in the nh, all others 12 and under love to visit him. i know they should do the right thing and visit him but i also understand where they don`t want to see him like that, he is starting to forget who they are and it hurts, i myself have a hard time to visit him i am depressed for the entire night and cannot sleep, he thought I was our older daughter yesterday until i started talking to him. He used to be such an active dad and now looks like he is 90 yrs. old, only 69, they want there fun loving father back who used to make the laugh. i know when my mother was in a nh i had a hard time to see her would just make me so sad and i would not go and see her much, i wanted to remember her as the mom who could do everything , i am sure my kids feel that way about there dad so I don`t pressure them on it, i also see the tears in there eyes when they do visit and they are awfully quite when we leave.i have talked to my children about this , have you tried to talk to her and hear her fears and reasons why she doesn`t want to visit?
I have a 26 year old daughter and a 22 year old son. My husband is still in early stages but due to the FTD he is not the dad they had when growing up. My daughter has had a very difficult time dealing with the changes in her dad and at the time of his diagnosis and when the changes were noticeable she was not living with us. During the time she was living elsewhere she rarely came over and if she called and her dad answered always immediately asked for me. She could not sleep or eat and said that she didn't like seeing her dad because all she wanted to do was cry. Well, one day her brother, who has had a hard time too but has not hid from his dad, basically lost his temper with her and told her that she should quick feeling sorry for herself and know that even though their dad was different he was still here. He wasn't in any pain or unhappy. She was angry he spoke to her that way but I was glad because she did start to try harder.
A couple of months ago she had to move back home due to circumstances beyond her control. During this time she has become more comfortable with him and has even helped me out. When he gets stubborn and refuses to listen to me, she will step in and he seems to listen to her. She told me the other day that she didn't think he liked her much because she feels like she is ordering him around. I told her no, that the only way to get through to him was to be stern, but not yelling or mean.
My husband can be a trial and you need all the patience you can gather to get through each day, but I am proud of how my daughter has matured. My son just seems to get stronger.
My husbands sons live in the middle of the country and are not here often to see him (one son 2x a year the other 1 x a year or less). When he was diagnosed, he said that he didn't want them changing their routines for him. Well they didn't and now he is almost at end game and they will never be able to resolve anything that they have stored inside them. I felt bad for him in that they didn't visit him more often and I feel bad for them in that they lost so much. One of them did say that it was too hard on him to see his father.
I do believe that my husband losing his mind to AD before his body deteriorated is the right way for my husband to go - he would have been so miserable if his body went first and his mind was whole. I also believe that for those of us left behind, the mind going before the body may be harder because you see their shell and noone is at home.
My daughter is 16, my son 19. My husband their father was diagnosed as in the very early stages of Lewy Body Dementia a year ago. They are away at school so hadn't spent much time with him until we had a 10 day family vacation together last week. They are definitely having some trouble making sense of it. My daughter got frustrated that her father wasn't doing his share of the work. She didn't say anything but I told him that and he did do more.
My Daughter was 10 the year her Dad was diagnosed with Schizo-Affective Disorder. This, on top of the learning disbilities he's always had. She grew up with some of his problems and how he coped--he was her Dad. She learned and adapted to how he was. The only issued I recall coaching her on was that when he wanted her to do things for him and she was busy or there was no reason he couldn't do that thing himself, she could refuse--but she would do so respectfully. I worked to be sure she had outlets to keep her life as normalized as I could. She had completed college and moved to CA before he was Dxd with Vascular Dementia. It/s been too far away to see her much, but we keep in touch. When she was here last week, her demeanor with him was as normal as before. She visited. She correted him when he started calling her by her Aunt's name, but never rudely. She admonished him to water the 2 lion planters on the porch and he is. While he slept, we talked. She knows about the smoking issue looming. She understands and agrees with what may happen and how it will be handled. Though she lives too far awy to be actively involved, she cares and she is supportive. Aren't I lucky?
Thamks everyone for your comments. My daughter lived with us on and off while in school. The last 1 1/2 years, she was with us. I would probably find this easier if she had children but as it is- she works M-F days. Before I had Katie, it took me 9 years to get pregnant. The first go round, I had a miscarriage at 23 weeks. We were destroyed. After some testing, dr told me to try again. Luckily, she was born 20 months later and I was told I could not have anymore children. We were thrilled for having our daughter. It is bad enough that all our "friends" are now treating us like we have a contageous disease, I want her to be more in my life. I feel like I am loosing my dh and don't want to loose her too. She is very uncomfortable talking about dh and I am at a loss for words (a rarety, I know!). I don't want her to be more stressed than she is.
It is difficult. When my mom was bad - dementia and numerous other heath problems - we all had our own way to deal. I tried to see her often, going and feeding her but she couldn't talk or even have eye contact. He body was failing. One brother went one a year cause it was his duty. My youngest brother refused to go see her - he wanted to remember her how she was.
Kids have their own ways to deal with it and even though it is hard on us, you have to allow them that privilege. As hard as it is, can you try to make the conversation all about her when with her or on the phone? I got real good at this after my hb's affair - it worked good as no one ever found out.
She doesn't love you any less or her dad. It is just the only way she can deal with it. Hopefully after he passes on, she will not have any regrets for staying away. And, as other have found with their kids/grandkids - the more time they spend around them, the more comfortable they are. deb112958 found that out with her daughter. Kathryn, could be your daughter is just too scarred to try. Just keep communication open with her and do not be angry with her because she is staying away or acts like her father does not exist.
Charlotte, your words have been very soothing for me. I have also been saddened by my youngest daughters behavior. Since the dx she has really pulled away. Before the dx she researched medical information and did all she could do setting up consultations with colleagues for her Dad . She was heart broken when we finally learned that it was AD. When she was in graduate school she did work with AD patients in a Veterans hospital. Her work involved the wandering effect based on time of day on patients. I think her time with those patients truly did scar her.
She does not live near us but I have missed our conversations. Anyway, recently I have found myself almost angry with her being so distant.
And so when I read your post , it was a wake up call to me. I think I need to allow her the privilege of dealing with things in the way that she can. Her inability to deal well with this horrible illness shouldn't change how I feel about her.
I think that this board allows us an opportunity to look into the lives of others and learn from how they handle things....
So many of us find it almost impossible to be out in our communities and not somehow start to talk about our spouses. And the same thing when family calls to check in. We all also know how tiresome it is when you say to someone "how you doin'? " and they TELL you! Maybe what is called for in some cases is less response to that question and more asking how THEIR lives are going.
None of us want to interrupt the busy lives our kids lead. But with phone answering systems and in particular with email, there's no need to just sit and avoid making contact ourselves, at least not until we've been rebuffed several times. I confess I also, when emailing the kids, try to ask a question they need to respond to: do you want Aunt Jessie's antimacassars, or shall I put them in the garage sale, etc.
HA! Wanna know how MY 24 year old handles things???? Read my recent post entitled, "My kid just doesn't get it". You all that have children or others that can even manage a "hello, how are you, mom, and how is my dad" are the luckiest people I know. Thank God for it, even if they seem self-absorbed, thoughtless or uncaring at times.
I was a bit surprised on how his sons handled the disease. The one who had worked in nursing homes and hospitals could not handle it at all - it was his Dad. The other one who had not had those experiences handled it much better even though he was miguided at times. I don't think that they ever really got it. I used to beg for pictures from them to help my husband remember them and the grandchildren - nothing. Various stages of the disease do have different ramifications when it comes to how family handles it all.
I am so upset that I am writing this at 1:30 am est. My daughter has not called me all week. I saw her for the first time at my Dads today. She came in, talked in general to all. Never asked how her Dad was and then said she had Tues off because they are cutting everyone 10% of their pay thru Aug 31 and requiring 5 furlough days as well. When I asked her what she did Tues she said "nothing". She sure knows how to call when SHE needs something but not to call and ask how Dad and I are is very upsetting. I know it is hard for her to visit but a phone call is different. Other than my younger sister, only my daughter and her boyfriend have been up to see dh at the nursing home(unless you want to call visiting when he first got transferred there and had a stroke so I called his niece and asked if she wanted to bring dhs dad to visit. ) My older sister has not visited once and no one asks me about him anymore. I am so upset. I know people have a hard time coping but so do I but I still go. They don't even ask me about dh anymore. These are the same people who were a great support system for me before he went into nh. I am so hurt i can't explain it. I asked my daug. what she was doing tmrw but she blew me off (I only think about today)! My younger sister is staying here tonight. We watched "The Curious Case of Benjamin Buttons" (I may have the title wrong) and I was fine till the end when he was diagnosed with dementia. When I went to bed, all I could do was cry. Thus, I am up and writing. I am hoping that this will tire me out enough to get to sleep. I am so tired of being so supportive to everyone else and getting nothing in return.
I've been trying to figure out this attitude as well. From my own experience and the discussion on this forum it's too common to be a fluke. I'm wondering if the denial isn't some kind of defense mechanism. Like coming on a terrible accident or some natural disaster. You know there is little you can do and getting too involved will be painful and seriously disrupt your life so the easiest thing is to just walk away, ignore or deny that a problem exists.
You know, I think this is about one of the hardest aspects of the disease. With the person with the dementia one eventually understands and accepts that, This is my life now and it's just the way it is. But just when you think you have also accepted the neglect of the family something happens to bring it up again. Over and over I tell myself I'm just going to accept that they prefer to stay away or not acknowledge the disease. Then something else comes up to trigure the hurt and resentment. Since they are supposedly fully alert and functioning you would think they would be more caring. My step children just don't have the time or money to spend time with their dad, then I get so upset when I learned they can go camping or on vacations, etc, ect ad-infinitum!
We also have grown children, our daughter is 25 and lives in NYC, however she was home for Mother's Day (in between jobs) and stayed for almost a week! It was like heaven! BUT, it has not ALWAYS been this way. The times before this one, I literally have had a FIT screaming about how I get no relief, even when she is here. So, this time, it was actually such a pleasure! She cooked for us, stayed with her dad while I was @ the dentist, and actually took him to the store with her a time or two. Perhaps it takes some longer than others to "get it". Don't get me wrong, she too is SAD SAD about the whole thing, BUT, I think she realizes the importance of just "being" with him. On the other hand, my husband's two older kids, ages 35 (girl) and 30 (boy) live within 45 minutes of our home and do not come to see their dad except as someone mentioned above, the obligatory "Holidays". We have not seen them since Christmas. Father's Day is approaching this Sunday so I suspect we'll at least "hear" from them. As Gmaewok said, I go back & forth as well with the "it's okay" and "this is not right" thinking. But as Charlotte so eloquently said, each person must be allowed to handle things as THEY can...we are all doing the best we can as well. And as you all know, some days are easier than others. Hang in there, Katheryn...