Just to give a bit of background... Lynn has 4 children, from 2 previous marriages. He has 3 sons and 1 daughter...ages 46 - 39 ... I am 41..... So we never got into the step children/stepmother names. They are Lynn's kids, they call me Nikki. But, we are very close and I love them greatly! We have been a family for 23 years!
My mind goes to when my grams had another heart attack, 70% of her heart was severly damaged. Grams insisted, no surgery, let me go. My mom was her POA, the second person had since passed away. My mom wasn't able to even be there, so we were left as grandkids trying to make these choices. It was just awful! There are 7 of us, some wanted my grams wishes followed but a couple were not ready to let her go, and wanted her to have the surgery. No one loved her more or less.... it was just how each one dealt with being thrown into deciding if grams died now. It took several doctors to explain she wouldnt survive the surgery, for us all to come to an agreement. It was already so sad, but having these choices to make, made it that much harder.
I can see the same thing happening with Lynn. I care greatly for his children, and I will always listen to their concerns... and pray we can be on the same page. I was wondering if any of you had any suggestions on how to explain stage 7 and end stage.... to children that are not involved in his care, and see him rarely.....but do love their dad with all their hearts. What is the kindest way to break this news to them? Keeping in mind, I am falling apart here as well.
I thank you in advance for any advice you have, Nikki
Nikki-don't forget our motto-once you have met one dementia patient you have met one dementia patient. My LO was totally out of control when his neuro put him on seroquel. She knew I am a nurse and would be familiar with black box warnings. The rages were so terrible we didn't know where to put him. The neuro looked me in the face and said "you know the dangers of the drug-but you have to have a life, too". That drug have my spouse an extra year at home. At this point his heart is doing better than his brain.
Nikki, Do you think giving them literature would help? My favorite is the one on Joan's site. It sort of tells the whole story. I guess you can print it, I haven't tried.
Val, I was thinking on that too... maybe collect some good material and send a copy to each of them. Any one have any good ideas on what I should send. Keeping in mind, they are just as lost as I was two weeks ago ... and have not accepted this is fatal. It is hard as they have little face to face contact, they just don't see what I do. Thank you again, Nikki
The FDA has asked manufacturers to include a “black box” warning about the risks and a reminder that they are not approved to treat dementia symptoms. The warning states:
“Elderly patients with dementia-related psychosis treated with atypical antipsychotic drugs are at an increased risk of death compared to placebo.”
I'm not so sure I'd say anything to his children at all, other than what you need to tell them to get the help and support you need from them.
Few Alzheimer's patients go through Stage 7, simply because they are older and therefore are likely to die of something else. And the "something else" may be much gentler and kinder than the AD.
And since they are adults, and pretty much your age or older, if they wanted to know, they could easily find out. Many people prefer not to imagine what could happen, but only deal with what DOES happen.
My first husband and I made that decision when he was dying of cancer. There were all sorts of things that could have happened, that didn't. I'd have gone crazy worrying about them, without any need. What did happen was bad enough.
Perhaps send them the Hard Choices booklet if you're worried about "being on the same page" with them, maybe say the doctor gave it to you or some such, so you and your husband would have the knowledge you need to evaluate the alternatives. If they want to know more, I think they'll ask.
Nikki-If taking the Seroquel has stopped the violence then to heck with the black box. AD is terminal, this is where quality of life comes into play. As for his kids, you may not be able to get them so see what they don't want to see. They may not be able to accept what is happening to their father. Of course later on they will have no choice when the progression continues. My husband's children from his first marriage absolutely refuse to believe their father has AD. They too spend so little time with him they can't see the changes or don't want to see the changes in him. This denial makes is doubly difficult for the caregiver as we are living it daily with no emotional support from the family. There are none so blind as those who will not see.
Thank you for the input sunshyne, something I will have to chew on.
I think I will give it time, and answer questions as honest - open- and kind as I can as they come up. He is in late stage 6 now, ..... and as I mentioned as his decline has been fast... the doctors "best guess" is he will be mid to late 7 within the year. But, it is so true that it is just an educated guess.
Maybe for now, I will pass along a general booklet or such, that gives information on the disease, but does mention it is fatal... Will have to give it more thought. But thank you very much for your information! food for thought for sure, Nikki
Yes Asy, that is the same conclusion I came to when I was faced with the black box warning.... It has to be about his quality of life. For now, the seroquel has been just short of a miracle... I know that could change... but I choose not to worry about that and just enjoy it!!
I am lucky that his children care for me too, and do know how greatly I love their dad. Perhaps it is because I feel so cheated by my own fathers recent death.... that I want to make sure they never have to live with the things that are haunting me....
But yes, one comes up once a year for Christmas and she just loves him so, but doesn't see him enough to face the changes, or feel the effects of living with it. I feel for her, as it has to be so hard. She knows I love him though, and has told me many times I am her superhero, so I know too, I am appreciated. It makes a huge difference.
I congratulate you for being so willing to share your DH health with his adult kids. but, i agree that since they ARE adults and older than you, they should be informing themselves on the disease etc without you having to lead the way. his care is in your hands, assuming you have healtcare POA and you are his legal guardian as wife. the 'what ifs' are outruled when aggressive behaviour is involved, we all have found this out. any dr will tell you there is risk assoc with every drug. black box is on almost all antipsychotic meds. your dr must decide if the effects of the drug warrants the possible side effects. the adverse side if no meds to control the rages and they will be locked up and on whatever they deem necessary to control him, this is why so many of us opt for the drugs at any cost. better at home if possible than facility. i also agree if you decide the med is in his best interest the kids should be grateful you are in charge and caring for him and should be told what you and your DH decisions are about what ahead. i am in the same boat you are in with adult grown kids who dont visit but say they 'care'. i make the decisions per DH about his healtcare now per HIS request, and i inform them what those decisions will be. since they take no active part in his caregiving they have agreed on my decisionmaking. i hope you dont allow their lack of participation in his care to unduly influence your decisions.. good luck, Divvi
Nikki, I don't remember reading whether you have POA and DPOA for him or not. If you do, the decisions on what drugs he will have are yours after discussing it with the doctors. Some of those items should not be open to discussion by his children especially if they are not around often enough to see how he really is. Many of the drugs used to treat AD have similar warnings and yet they are the ones most often prescribed. His safety and yours have to be the priority.
The reality of AD when seen by loved ones that don't visit often is very difficult for them to understand and accept. If any of them have nursing home experience or AD experience, they may understand better what is going on but for them it is still different because they are the child.
I've been yelled at, intimidated, demeaned and and a whole host of other actions/words that left me in an additional world of hurt by various members of his family. They weren't seeing what it was taking to take care of him even when visiting. They weren't seeing how much it took out of me just to make it through the day. They had all types of wonderful ideas on what I should be doing and yet no viable suggestions on how to make any of it happen. The end result was I lost most of his side of the family (if I ever really had them). It was bad enough that I was his target when he was still home, I didn't need to be their target too.
Nikki, the Alzheimer's Association gives away a book that is brutally frank, while still being kind, about what the disease is like. You can have 6 free copies for the asking. Get as many as you need and pass them out. If they are willing to do some reading on their own, tell them to go to the Hard Choices website and read that book on line.
The real advantage is that the books are short, and they are very clear that the disease if fatal because the author's wife has already passed away from it. Beyond that, they need to read up on their own, and then all of you need to have a family conference (do it by email if in person doesn't work) where you tell them what hard decisions you have chosen to make when the time comes, and ask it they have questions or comments about those decisions.
It really is all you can do. I've basically done the same thing with my daughter and son-in-law (only on the phone) because my therapist "told" me to do it. I told her that I'd done my "homework" and she was amused that I took it that way, but probably was glad I had. It really lowered my anxiety level to have no more secrets. I am no longer doing this alone.
Thank you both divvi and therrja for your valuable input. I am his POA and his DPOA, and we have the living will etc etc. My own father's recent death HAS changed many things , among them my need to make sure his children are kept abreast of their dad and all conditions... Due to my TIA stroke I wasn't told my dad was again sick, or that he thought the cancer was back. I saw him at least once or twice a week .... we were extremely close....I had a TIA, and in an attempt to not upset me, I wasn't told. I will forever be haunted that I could have stopped my dad from taking his life.... if so many ifs!! So, now I am left with an overpowering need, to never have Lynn's children feel as I do now.
When the doctor informed me how bad Lynn's decline was in just these past 6 to 8 months, I decided it was time the kids had to know. I spoke only to one of them, and he decided now was not the time... to wait for 7 to come and then face it then. I told him I would leave that up to him.
My intent is to NOT have to face what you have therrja... I am not sure I would handle this with my usualy grace! I can't imagine what that must have been like for you. I am lucky in that we are able to have open communication... I always try to word things, as though this letter was being written to me, a daughter about my dad.
So far things have worked out well, partly because we do care about eachother and do all love Lynn. I think I have been able to explain why the medication is needed in a way they can understand. What I fear, is if things are not talked about now, end stage....before the need is there... their will be turmoil... in the time when I wont be able to handle it.
What I do need to learn is I just can't be everything, to everyone. I guess I will let this sit for awhile... and just trust when the time comes, they can love their dad enough, just as we had to love our grams enough,, to let her go.
There was a terrific article on cnn.com a while ago about wills and stuff around it. One of the comments was that when wills are contested, it is usually because there are emotional issues that were never resolved. With this disease, the opportunity may be gone before anyone realizes the need to resolve the issues as the person with AD may no longer be able to respond appropriately.
There are a lot of aspects to this disease that really are awful.
Nikki, I think there are research people (who seek out all info they can find about an illness) and those who are not. Just different types of personalities. (I've seen it in my family). If some one is a non-researcher, they really don't want the information, that is just not how they function. So, I don't think sharing any info, booklets, printouts, etc. are going to help.
You may also find that even if you discuss and agree about what to do or not to do later about treatments, that may go out the door when the actual time comes. It is so great that you have that kind of relationship with his kids and are so concerned about them, and have their support.
I'm not sure there is anything you can do at this moment to help them through this, especially as they are adults. If they were minors, it might be different. I would keep them informed, and take care of yourself. No amount of preparation is going to really change how any of us actually deal with some one's passing.
My life is not as complicated as any of yours. My husband is easy to care for. Does not know me or has known me for a long time. He sees me as either his mother or a caregiver. Either way he loves the person he thinks I am. Seroquel is a life saver for me. He takes only 25 mg in the morning and 50 mg in the evening when he goes to bed. I asked the doctor about the warning and she reassured me that all was fine and to go ahead and give him the medication. Don't know what stage he is at nor do I care. He needs help getting to his feet, with personal care and bathing, getting dressed and help with cutting his food. The Seroquel is as far as I am concerned the thing that is making him easy to care for. He has hallucinations but I reject any medication for it. Who care if he sees people building things in the yard. I tell him we are not paying for it so we don't have to be concerned and he is happy with that. I confess, a couple of times when I was EXTREMELY busy I forgot to give him his medication and there was a HUGE difference. As far as I am concerned, Thank you Dear Lord for Seroquel Sally
Mine called me at work one day and told me that there was a huge train wreck right in front of the house. As there are no railway tracks anywhere near the house that was very interesting. I actually had a cartoon picture of a train wreck in my head. We talked about it later and I commented on how as there were no train tracks I wasn't sure how the train got there. His answer was it would have taken a really big truck.
Even when things didn't always make sense, I still treasure some of the memories. It is interesting to watch how his mind works on things even now.
The more I see, the more I appreciate the intricacies (sp?) of the human body.
He is on Seroquel and they often use it to help keep him calm - it mostly works.
Don't you just love people who aren't around to help you in your caregiving, but feel they have some sort of jurisdiction over the caregiving anyway?
Here's my take on it (for what it's worth):
If you aren't around the LO more than 24 hours in any given week, you have no say. If you haven't traded lives with me for at least 48 hours in a row, you have no say. If you have never taken the AD patient to the mall and out to eat by yourself, you have no say. If you didn't show any interest in the person before they got sick, you have no say.
My best advice, due to all the 'helpful' family that have wanted to tell me how to run things,....do NOT tell anyone anything! If you want to give Seroquel, give it. If you want to stop medications, stop them. If you are ready for a NH, do it. If you are not, don't. I think a lot of times we feel guilty for decisions we make, and we hope that someone else will make us feel better by agreeing. Then we are blindsided by people who don't see the big picture. From now on, leave everyone who is not an AD patient caregiver out of the decisions. Tell us...we'll understand. That's what this board is for. Tell everyone else that things are going on as well as they can be expected, and thank them for the interest. Our time is too short to have others second guessing us. We have enough to worry about!
Wow...that got me riled up. Think I'll go steal a dose of Seroquel for me...LOL
I am quite aghast myself! I think I need to watch Letterman in my easy chair tonight.
Many pardons for the rant. My only excuse is that today my DD went to see our church about funeral services and such. Nothing imminent, but DD wants to do as much as possible before I am crazed with grief.
Your rant was perfect, and very much on-target. Words for the rest of us to live by.
It's good to know your DD is helping take care of you. My father was a very strong man, and he adored my mother every day of his life from the day he met her, and took care of her every day, without faltering, even after he had to have her placed, except when he was in the hospital himself. It took me very much by surprise, when he asked me to handle the arrangements for my mother's funeral. Of course, I was honored that he would let me ... and that he would turn to me when he needed help.
Trisinger...We don't have children or any close relatives but I agree 100 percent with your post. I am not the type to put up with people giving their 2 cents worth when they don't have a clue what's going on.... I am more likely to say too much than I am to say nothing. I haven't gone through (YET) what many of you are going through and I admire all of you for loving you spouse so much and the perseverance it takes to be a caregiver. Everyone else should just BUTT OUT.
I have to say I came here a little bummed tonight.... and trisinger you had me laughing so loud it got my dogs to barking!! LOL Like I said, I think am overly vulnerable due to my own father's recent death. I like your thinking! I will try harder to adapt myself to it :)
No, they have not helped in his care at all. Never taken him alone anywhere - a couple do call on a regular basis now. They have never watched him to give me a break. Not even after my TIA's or my mini break down over my dad. Though every single one of them did attend his service, and kept Lynn with them so I could just grieve without worry. That meant a great deal to me. But whenever I need them, there are a couple I can call and they are ALWAYS right there for us
I'm lucky. Both our children live in the area, and when I went into the hospital for a month they took over DW for me. They made sure I made it out of the hospital, and I went to live with DD to recover. They got DW into a great home 10 minutes from me. They made sure my bills were paid and just took care of it all.
But tonight, a big step. I am spending my first night alone in my house. It's the first night in probably 10 years I have been alone. 40 years ago I went from my parents' house to living with my DW, and then our family. Other than business trips, which were three or four times a year, I'd never spent a night without her until I went into the hospital last December. Then I went to DD's house, and now, tonight, I am alone.
Oh I can't imagine how difficult this must be for you, my heart goes out to you. I can imagine how hard it is for you, as I too went straight from my parents home to living with Lynn. We have only been apart when I had to have my surgeries. I can't begin to think about facing all that you are now....Goodness so many trials you are facing and all at once too.
I know this sounds so trite in the face of all you are feeling and dealing with, but you are not truly alone.... you are only a post away from people who truly care about you and will help you through this any way we can. ((york))
Your daughter wrote me a note, she does seem so very sweet! You are so lucky to have her and your son in your life...but I know you already know that! I am glad they have done what they could to help you. I wish all children could care so much about their parents. Keeping you and yours in my thoughts, Nikki
I wonder how I will deal with being alone at night in this house once that happens. I HATED the business trips. During the time we were in California there were very few of them because of the kind of job he had. In most cases he was only away one night at most if they headed up to Northern California to a machine building company they were doing business with. But in previous jobs there was a lot of business travel. I hated being alone at night.
But I know it is going to happen. I have no idea how I am going to deal with it, or if it will be easy or difficult once it happens.
My parents lived halfway across country from me, so I wasn't able to help out as much as I would have liked. (I tried and tried to get them to move here -- they loved San Diego, and before my mother's AD got too bad, would come visit me for a month once or twice a year -- but no dice. They wanted to stay in the little town where they'd lived for so many years. By the time my father realized they should have moved, my mother's condition had deteriorated too much.)
When my father had to have surgery, he asked me to come stay with Mother. He said she had never been alone a day in her life since they married, and he couldn't bear the thought of her being alone in the NH, even though she was far beyond recognizing him any more, or remembering if he had visited. I dropped everything in my dear husband's hands and went there for a couple of weeks, until my father was back in his apartment and feeling up to visiting the NH every day again. I split my time between the NH and the hospital -- my father needed the company far more than my mother.
After she died, he came out here to live with us. He was very brave about it, tried to make a new life here, started volunteering at Mission Trails Park, helped with the chores (that was nice!!!) He and my husband got along wonderfully well, and we took him along on trips to Monterey, which we all loved. But he was clearly so very lonely... There's only so much a daughter can do. They'd been married more than fifty years.
After trying to keep my Hubby's family informed, and getting flack about "all the medications" (chemicals are bad for you), and then having a major confrontation with some over the road worth motorized scooter he can't have, that they brought here behind my back and persuaded him it was right to keep secret (got that gone), I went through a serious evaluation of where my responsibilites lie. My conclusions, 1. My job as wife and Guardian(Legal) is to care for and look out for him. With the consultation of the professionals involved in his care, I will make the best decisions for him that I can, taking into account the conversations about medical care and end of life issues, that we had before this showed up. I have told his family thatI will keep them informed. I have also stated that if they cannot respect my decisions as his wife and caregiver, they will have to respect them from me as his Legal Guardian. I had to get straight in my head that I am not responsible for making this better for them. I am also, not responsible for any consequences they incurr if they go against the decisions I make. They are all adults. They can consult the Alz site. If they want, I'll authorize them talking to the Drs. (at their expense). But, Hubby is my Priority.
corosi, thank you... you put things a bit more in perspective for me. I am his wife, his POA and DPOA... I guess when it comes right down to it ... it is my responsibilty. Lynn trusted me to do the right thing by him.
Nikki, I also am owed an apology from a member of my husb's family, but I won't be holding my breath either. After a written letter from me to the offender & no response (2 years ago), I consider that relationship 'severed'. I wrote a ton of stuff on here & then tried to add, but i wasn't signed in...ugh! But, I got it off my chest anyway. I am better off without that family member in our lives and my husband doesn't ever ask about or want to talk with the offender, so that's just fine.
As for grown kids who don't come over or hardly ever call, i used to get upset about it, but now just am really glad I don't have to deal with that either. If I want to, I take their dad to see them...if we can even get schedules coordinated. Last time was "after" father's day because they were working on the day, but who cares as long as we 'celebrate'. Which we did by eating out. A few days later, my DH didn't remember being @ his dtr's new apartment...no matter how many 'clues' I gave, so it's okay. When they call, he's always glad to hear from them & 'perks up', but if they don't call, he doesn't ask about them. I try not to judge their decisions to not come around or call more often...it is really hard to deal with this 24x7 & I just think every person handles it their own way. Not having them here often actually keeps me from having to worry about that visiting stuff anyway.
When my father-in-law passed away in 2005 after falling & losing his ability to swallow/feeding tube, we discussed our "end of life care" and everyone knows what was talked about because I told them what we had agreed upon. Not just for my DH, but for me too. Just keep us comfortable. I don't feel that I owe anyone any explanation of what I'm doing or when. I love my DH, as I know each of you love your LO, and will do what I have to to help him through this disease, regardless of what anyone else thinks.
Lynn has now forgotten who is daughter is for almost 3 weeks. So damn sad! I can't explain why it is her who is the first of his children to be slipping away... she was his princess. She lives out of state, and has recently stopped calling as often... I know this is so hard on her.
As I have said, we are all very close.... I had been torn, do I call her and tell her she is slipping from his memory? Or do I just wait for it to hit her brutally like a 2X4 when she sees him at our annual Christmas gathering ….. I again, thinking as a daughter myself, thought I would like to know... so after much debate and a talk with her brother... I decided the kindest thing was to let her know now
I called her Tuesday night.... it was so hard!! She thanked me over and over for letting her know though of course she was hurting. I knew she knew someone she cared about with AD... what I didn't know until talking with her and her brother was they HAVE done research... they do know what is to come.
That talk with her did more for my spirit than I can tell you. I was told how much I was loved. How MUCH they trusted me with their dad's care. How thankful they were I loved him enough to care for him and keep him home. I also found out one of the reasons they have been reluctant to offer help or advice is they were afraid they would hurt my feelings... or make me feel they didn't have 100% faith in my care for him. They told me they would surround me and Lynn when the hard choices had to be made, and together we would be able to do the right thing, the loving thing for their dad.....WOW!!!
We also talked about how we could try to keep her memory alive in Lynn. She made him an album 2 Christmas' ago .. it is so beautiful... but hasn't been enough of late. We talked and I told her I truly thought it was because the phone calls were not coming as often. I feel this way as it is those he talks to or sees often that he is holding onto.
She called last night, and after hearing her voice, and seeing her photos... eventually he DID recall her!!!! I can only imagine how she must have felt. She told me she is coming home for a visit next month........ and will call at least once a week. Lynn's sister is also coming for a visit.... as well as my sister who lives out of state. She loves him so much!!
I am falling apart... they are falling apart.... but, we are pulling together K, crying now.... damn this has been a week for tears with me. So long with none and yet, now I can't make them stop!
Nikki, You are such a sweet person. This board has helped me to deal with my guilt and problems with step-daughter who has POA. His other daughter is very understanding and she is talking to her sister about her actions but I don't think I'll get the POA. I did talk to his Dr. about giving him the Risperdal and he said yes, he is suppose to taking it and it will help with the hypersexuality(which he called it!) His daughter held it from him when he left for trip and when he was with her but I'm not getting any rest so I ordered it and left her a note that he has to take it. His dr. said we have to work together but I don't have any say on his care, the decision comes down to her. I still feel very resentful about it and he still says I said I was going to put him in a Nursing Home over a year ago when he got it. I don't think his mind was good then and he was paranoid then. The only thing he is taking now is Aricept and Paxil. He is incontinent a lot and I wanted him to take the Detrol but I do understand that it interfers with Aricept and makes him sleep more. Sometimes I wish he would sleep more to give me a break. Is that terrible?
Nancy1940 - it is not terrible to want and need a break. That is so normal whenever you are taking care of anyone.
Step-children can be wonderful (as in Nikki's case) or a nightmare as some of the rest of us have found. There are so many issues in caring for and taking over a person with AD's life and decisions. Unfortunately what makes sense to a normal and rational person does not always make sense to them and they can fixiate (sp?) on something that you may have said taken totally out of context.
My husband all of a sudden decided that the contractor we had been dealing with for years to do various things around the house was not trustworthy and he would leave the room whenever the contractor was over. We had had that gentleman over for dinner many times over the years and he and my husband had always had wonderful conversations. I have no idea what my husband may have heard/overheard or what that made him do a reversal on him. It is a good thing that he understood something of what was going on with my husband and stuck by me because I would not have done as well as I have maintaining the house without him as my husband went further and further into the disease.
It concerns me that you are taking care of your husband without any control over what happens to him or your joint finances due to your step-daughter having POA. That seems like a recipe for major future problems as your husband progresses in the disease. Maybe others on this board can offer some suggestions on that one.
Thank you Dick. You reply was short, but said so very much. I appreciate your support.
Nancy, I can't imagine doing all the work and having no control over his care. as others have said in different posts concerning this, you can't have the control without providing the care, the opposite should also be true. If she wants the control so badly, it should be HER doing all his care. IMHO
Lynn's children are wonderful. We had our rocky times long long ago. It isn't easy marrying a man who has children older than you!! Young I was, but I was also very understanding of how they must have felt. I work extremely hard to show all I ever wanted was to love and care for their dad. I never pushed myself on them or tried to force my feelings off on them. Slowly, a love and respect grew.
I think I'm so resentful of the POA that I cannot give proper care and get impatient at times. Anyways, I am still filing for divorce or legal separation to split up our property. He isn't really that bad that he can't drive and do things yet. He just can't handle money properly and he is driving me crazy, where I hardly have a minute to myself. We went to Cleveland today to Case Dental School where he got his denture. It was broken and he was going to have them repair it. Well, when we got there the parking garage that we usually go into was closed and we didn't have much time so I told him to walk through the garage to school and I would park the car somewhere else. He went in with his dentist and he must have really given him a bunch of BS (that is what DH is so good at) When he came out it wasn't fixed but he was going upstair to make an appt. to get implants. He said they wanted to charge $160.00 to fix his lower plate and he told them he would do it himself. But he thought nothing of getting implants that would cost at least $2000.00 each. I'm going to cancel the appt. But it sure was a wasted trip. He's probably too old for implants anyways.
Nikki, I am so happy that you and your stepchildren are coming together during this more-than-difficult time. So sorry that you are going thru this, it's probably really good that you are crying. I hope it brings you some relief. It's all just so heartbreaking. But I think Lynn has chosen you to guide him through this rocky terrain and I think this choice was very wise.
Nikki, I am so sad for all of you. We are getting to the same place with Chuck's brother who also has AD. Chuck's sister-in-law called and said her DH no longer can remember what a fork and knife are for and she asked us all to come and see him before he can longer remember us. She thinks he will still remember his brothers. His language is almost totally gone now and he has not been able to talk on the phone for months now. So we will all be flying there in a couple weeks. I was reflecting today, it almost feels like a death. I know my sister-in-law is so relieved that we are coming. I could hear it in her voice. I am glad we can be there for her because she has been a rock for Chuck and me also. I am afraid also because it will be a major reality check of what is ahead for Chuck and me.
I am going to suggest to Chuck that we put together a picture collage and bring it with us and hope that will trigger some memories for his brother.
Good idea about the pic collage, Lizbeth. Hopefully he will remember y'all and your visit will be encouraging.
Nikki, I cried when I read your post just now. I am a step mom too & I know how it feels to receive "encouragement" from the kids. My stepkids both gave me mother's day cards this year with sweet notes about caring for their dad & they just seem to "know" that I will be here for him. It is hard for the kids...they are losing their dad & their dad was really their encourager and always gave them "unconditional love". I am glad your stepdtr is planning to call more often ~ Sadly, my husband's kids do not call much at all, even with me asking them to call, write a note, etc. We had dinner with them on August 20 to celebrate my husband's birthday...no call or visit since. They live about 30 minutes from us. All I can say is it is very very hard for each person to handle this disease in their own way. Thanks for sharing your story with us, Nikki. I hope that all continues to go well in the days ahead for all of you as you work together for Lynn. He is blessed to have you!!
Thank you all for your kind words. Shoegirl, you are so sweet! Natsmom, how heart warming that they sent you those cards... It is so hard for them. I KNOW they love their dad with all there hearts. He has 4 children, 2 older than me, 2 slightly younger... we are an odd group, but the love is there.. that is all that matters. I am glad we had those long talks, I feel as if a huge weight has been lifted off my chest!
Liz, I will be thinking of you and your family. The collage is a great idea as is the "moving" picture frames. That is my next project for Lynn.. his daughter offered to do one for us too.
This is all so hard, I am just so thankful for Joan for creating this site and for all of YOU for caring and sharing. Thank you all! ((hug))