Even though I have been reading your discussions, I haven't participated until now. My DH has FTD and is in the early stages. It seems like everyday there is a new question that I could come up with. This quesiton is in regard to a well meaning neighbor's discussion with my husband. She shared this with me the next day. He mentioned to her that he planned on staying around and fighting his condition as long as he could. She told him that her husband and her would be here to help me and that he would never have to go into a nursing home. He, of course, 'grinned' according to her. (I cried) I am so perplexed. I am dealing with the up and downs of this condition, on a day to day basis. I see what it is doing to my DH and our lives. I would LOVE to be able to tell him that she is correct, but I can't promise this. Have any of you dealt with this problem and if so, how? Should I mention anything to her about this, so that she doesn't tell him this again? Or what?
IMO - I would thank her for being a good friend and neighbor. But somewhere ask her to please not make promises like that. With FTD he may have to go into a facility before he forgets.
i agree with the others. and thank her for being a good neighbor, (you may need to count on her so dont make her angry early on:) by the way, welcome! divvi
Whatnext, if you've been reading here you already know what a good place you've come to. Welcome, and feel free to tell us more about yourself and your LO and soon as you're ready.
Dear Whatnext. I'm so sorry you have to be here, but this is the best place you can be at this time.
You neighbor sounds like 'one of a kind' and I think she really did mean well. However, like the others have said, she shouldn't be making promises like that. I hope she takes it well when you speak to her about it.
Hi & Welcome Whatnext, I am sorry for your need to join us, however, I am glad you have. My husband also had FTD, he is 58 years old. Your neighbor does sound wonderful, however, I would speak to her, hopefully, she will understand that no one can make a promise like that.
Welcome Whatnext! I would take a moment to explain the basic differences between Alz that everyone knows so well, and FTD. People just don't understand FTD. I'm sure your neighbor was well intentioned, but she needs to be educated. It was very kind of her to offer such help, my neighbors look the other way at my over grown yard, even though I've offered to pay one of their daughter to cut it with their Ride on Mower. Thank Goodness I have an old friend who is coming today, but it is the hottest day of the year, yikes!
Let us know how she reacts to your talk. Glad you are here to walk the walk with us.
Whatnext, I welcome you on your coming out. It's good to have you with us. I agree with what others have said, you need to have a gentle discussion with your neighbor. I hope you'll keep posting, as we are always glad to hear another "voice.' Because of their therapeutic value, and since bluedaze expects it, I'll ask if you have any pets?
Thank you all. Your comments are so helpful. The neighbor is loving and a blessing to have. I am sure she means it, but doesn't realize what is coming down the road. I will 'gently' speak to her about what we are looking at, and explain that we have to realize that placement is coming. Our Internist said, "there will come a day, and believe me there will be a day, that you will have to throw in the towel". I told him I knew, and would, but dread it coming. We have been married 43 years. I am a 12 year breast cancer survivor, and last year found out that I have a Meningioma brain tumor. Thankfully, it is tiny and in a good place, if surgery becomes necessary. Folly, yes we have a pet. An adopted black miniature poodle. She is his 'princess' and whatever other precious name he can come up with. They have always sat, together, in his easy chair, to take their naps, until recently. She chooses her bed now. She is 10 years old. When my dear neighbor comes back from her business trip I will try to find the right words. Thank you all - I will be in touch.
You could gather some information and have it printed out for her that explains FTD and the prognosis. Make sure you find stuff that talks about placement will become necessary and/or take information on here (copy and paste).
Again, so glad you have caring neighbors. You are blessed.
I can't believe that i just read 2 different postings concerning neighbors sticking their noses where they don't belong. If someone wants to offer help, to sit with your DH or whatever, that's wonderful, great, yada yada yada.... but interfering, saying to your husband that he'll never go to a nh, or in the other case, trying to talk the wife who knows he needs a NH to keep him home.... these are really had decisions that don't need to be made by neighbors, they need to be made by the spouse, and family if there is one, and the medical profession. i'm sorry to say this, but I'm appalled. Offer to help but their advise and interference is not appreciated.
Welcome, Whatnext, to a source of help and good information. You know your neighbor, and it sounds like you have a very good relationship with her; so you'll want to keep it that way. I agree you should explain what FTD is and the path it will take. I expect she was being kind to your husband with good intentions--hope so, anyway.
I believe that there is a possibility that the neighbor is thinking that Alzheimer is just a "memory loss" disease...and hasn't got a clue about the challenges of incontinence, rages, becoming a physical and mortal danger to the caregiver (in some instances).. I would suggest that if it is at all possible, she visit a few caregiver meetings where these stories are told in graphic detail by those who are living the nightmare of AD.
Still amazes me how many people think that the worst thing that happens with Alzheimer's is that they forget everything.
And here I am with a different view of the subject. How can I always be so different in the way I think from others. I wonder sometimes if something is wrong with me. I seem to always look at things in a different way. With me if the neighbor told my husband something like that I would rejoice, I would know that he needed to have this secure feeling at that time in his life, I would probably feel that when and IF the time did come to place him he would be at a point that he really would not be aware it was a NH. I have even said those words to my own husband, you will never have to go to a NH. I would feel the security my own self just to think a neighbor felt that way about us. I would never confront her about it. What difference will that statement make down the road.
We know with this disease that sometimes we have to tell a fib to take the driving away, or other things that would harm them, why not let him feel this security. Guess that is what makes the world go round. different opinions.
Why do people always feel that it is a certain that one will be placed?
Jane, I agree with you. I have also told my DH he would never have to go to a NH - simply because he has said he never wants to be in one. Just one of the "fiblets" I use. If, and when the time comes, I will do whatever is necessary.
Jane...I don't think you are that different from a lot of us. I believe the neighbor was trying to be kind. If her husband is anything like mine he will not remember the conversation for long. Sometimes we are too sensitive to remarks that other people make. They do not understand unless they have walked in our shoes. After all the TV commercials made alz seem like just an older person forgetting their grandchildren's name. We need friends that care what we are going through. I do believe she could explain this terrible disease to her neighbor and to other close friends. I know I did not understand what was happening until I found this site.
For the same reason that people say it is a certain that they will never take pharma meds instead of naturopathic ones. Things change. Times change. Circumstances change.
With our stair-glide broken, and my bum knee, if I didn't have my daughter here to help I'd have to have round-the clock care; I can't climb the stairs comfortably more than maybe 2-3 times a day. So yes, I would/will have to get a one-story house, but I don't know when that can be. I can't even begin to think about it. With my husband's leg requiring a compression stocking, thigh high, if he can't pull it up himself (as he determinedly does every day) I will have to have someone else do it; I can't.
My post really didn't have anything to do with the NH per se, but to prepare the neighbor for what she will eventually see as his A.D. progresses. He will have days when he may tell them to get out of his house, or 'have an accident' when they are there. Understanding is preparation. My grandson still cannot get over his grandfather not knowing who he was and being shoved out of the house one day. He thought that there would NEVER be a day when his dear grandfather wouldn't know HIM!!! He was devastated!!! The pain lingers to this day, even though we've tried to explain.
Nancy B....the same thing (sorta) happened to my younger female cousin...she was visiting my grandmother in the the nursing home one day. Granny had AD but was otherwise very hardy. She "clocked" my poor cousin square in the jaw with a fist and really caused some damage. My 'cuz never went back! Maybe, Whatnext, you could invite your neighbor to a local support group meeting and see what "the other side" looks like through the eyes of other caregivers who may be further along with the disease?
My husband has FTD and is 59. Hopefully this neighbor will help you out in the future when you need it. I wouldn't worry to much about her telling your husband he would never have to go to a nursing home, but I would try to educate her on what FTD is. In case you didn't know, you can get very good information from the UCSF (University of California-San Franciso) site and the AFTD (Association for Frontotemporal Dementias)
I saw my pulmonologist last week. He asked me if I'd given any thought to placement for DH. I bravely said "Oh, no. I plan on keeping him home until I can no longer physically care for him."
He replied "Well, that may come sooner than you plan. Have you ever wondered why hospitals have 3 shifts? No one person can do it all and your own health is not going to get better. We need to preserve what we have."
I think the suggestions that you take your neighbor to a support group mtg and/or a NH for a visit is right on. Good luck to you.