I just recently had rejoined this website as my DH is mod-late stage 6. As I read through a lot of the posts, I realize we all have a common thread ( besides the AD). We are in need of a village, a village of people who are willing to help us with the care of our LO's. One of the things about this disease is it is so isolating. It is at this time, as you all know, that we need extra hands to help us, because for one person, this disease is overwhelming.
Maybe in other cultures, extended families and, perhaps, neighbours pitch in to help. And I've heard that there are some excellent care facilities that try to do this - the two in Vancouver Canada have very long waiting lists. Maybe we have to wait for a change in human beings? Or sometimes a seemingly impossible situation takes a turn to an unbelievable solution. I'm thinking about Northern Ireland and the hatred there, and then there was apartheid in South Africa; miracles happened. All we can do is our best in our own corner now. That's what we do, all of us, and I'm convinced that the world is a more shining place because of us.
We need to pool our money, find a town for sale that has a huge hotel and all move in. Then we can have our village of support, understanding, and caring.
I live in a village. I just got back from a funeral. The woman I went with lost her husband to AD several years ago. She has taken on two families in dire need for support and physical help. Most of the women in my aerobics class help their neighbors on a regular basis. I was the one called when my neighbor was dying. We're beyond asking what needs to be done and just pitch in and do it. I sit my neighbor's cats and he changes my high light bulbs. A handicapped daughter of one couple is simply accepted in anything we do. Yes-there are a few stinkers in the community-but if they need help even they will get it. I can't understand how this all came to be-but it just plain is. Too often someone needs help and resents not getting it. Perhaps asking for it is the first step. My neighbor and I spoke about this on our way home. You have to go through the fire to understand how others are hurting.
I truly believe what blue daze is saying about going through the fire to understand. I know that this life experience will not be wasted and I will use it for the good for others who are just now being diagnosed with EOAD. At our recent support group we had a new couple come for the first time. She was just diagnosed, and I recognized the " deer in the headlights" expression on her husbands face. Brought back a serious flashback for me!
Rosiek--I totally agree with your statement that this life experience will not be wasted and about using it for the good of others. We have struggled so much to learn how to cope with this disease and it would be a shame not to pass on that hard-won knowledge.
Hard-won is correct! This disease has already taken 10 years of our lives. I was only 47 when my DH was DX', I feel like it was a lifetime ago. So as we approach another level of care, I am trying to really stay focused on doing what is best for his care. Yes, hard-won!!!!
When H was dx with mci I was just about the same age as when it happened for you. My H's dx has been changed over the years, now it is called general cerebral atrophy.
There is no village. When you are in your 40's and have good incomes and can plan dinners and vacations there are a lot of friends who cannot run fast enough when something like this happens.
Bluedaze-it sounds like you live in a wonderful place!
So why do people run, especially family members? How can this be changed..... any thoughts, especially for those just starting this journey. I want to help those who have just begun this walk. How do we get this out there?
I think it has to do with our attitude about death. Most are just uncomfortabel with the subject. I submit that few on this board read the article on Hospice that I posted. It is not what we want to think about.
We are fortunate that our children have an old sense of family. As my husband got so much worse that I couldn't work anymore, my daughter Maria stepped up and said she and her family would move back home. I loaded hubby into the car with 2 grandchildren and went to Florida and stayed with my ex-son-in-law Joe for 2 months. While I was gone my son-in-law Brett ripped the roof off my house and added a third floor to accommodate their move home. When we came home, it was all under roof. Joe flew up from Florida to help with the drywall finishing and Maria moved in a month later. Brett planned the whole thing and his dad came up and stayed and helped with the electrical, heating, and cooling for free. I always told my kids that friends come and go and that your family will be your family forever. I also taught them that we tolerate much much more from our family than we do from other people. We love our family. Sometimes we may not like them or what they do, but we always love them no matter what. Maria and her boys lived with us when they were babies. Hubby and I worked and she took care of the household. We felt it was important for her to be with the boys in their formative years. Now it has all come back to us. We are truly blessed. It is so much easier when I don't have to do this alone. The other 2 kids are close, too...a phone call away.
Linda Mc-yes you are truly blessed-and doubly so because you realize it. Obviously you gave first. To me nothing in the whole world is more important than family.
A lesson I have learned through all this....there are countless people who tell me just to call if I need anything. They did that all through Gord's illness and now that he is gone. The others just do. They call and say do you need something from the store. We can take you or get the things for you. We have friends who call and off a specific type of help. They still do that now that Gord is gone. I bless those people and I am determined to be that kind. I am sure that the people who say call me mean it to some extent but the others really get it.
jang* it will be a while until you don't feel like you got kicked in the stomach when you have to check that nasty little widow box on forms. I still don't know how to refer to our/my kids. As far as those folks who ask you to call if you need anything-they probably do mean it-sort of. I found myself almost doing the same thing when people I know from my temple are moving into my community. I said "please let me know what I can do" and I got that blank look. I repeated-I really mean it-please ask. I asked if they had any pets I could watch for them and it turns out they have a cat who will be very upset by the move. I already gave them my carrier so their cat will be used to it by moving day. From now on I will think twice before making vague offers to help.
I think a lot of people don't understand these things until they are in the situation. A woman who introduces me as her dear friend has not called once in the 11 weeks ( almost) since Gord died. She is one of the vague, call me if you need help, people. She told me one day as she saw me struggling to get Gord into a taxi that if I was stupid enough to go by taxi instead of calling her, it was my fault. After that, I would have carried Gord on my back before I would have asked her. She and her friend go almost every Sunday to the mall and she saw me getting him in and out of taxis and trying to carry all the bags but she would not offer.
That may be true. Knowing you might be the closest this woman comes to friendship. And watching you struggling to help Gord might be the closest she's come to having an emotion. I'm in a struggle myself to not be bitter about the 'close' friends who utterly abandoned us. And to be honest she sounds a lot like them. Always some eye-popping distancing while making strange noises about wanting to help in some other lifetime and backing away slowly. But like you said further above, some friends get it and they are worth gold even though I admit I watch everyone closely. Nothing like getting really burnt to become suspicious of matches. I want to be real when I offer to help as well and I've worked hard to make sure I'm what I say. I'd love to say I can turn the other cheek easily; but, that wouldn't be true. I remember every slight for the rest of my life but I'm happy to forgive when they say those two little words and for the rest I've come to realize they really do re-write history in their own minds and truly have no memory of their actions. The world is full of Kim Kardasians and Chris Humphries' who wouldn't know sincerity if they tripped over it. That's not a knock. It's just true.
I also remember every kindness and every bit of support I get. I have no idea whether I'll ever be 'normal' again. Certainly what was normal is gone and I'm still in this fight so there isn't time or energy to think about all that as much as I would. What I do know is four of my neighbours on our little court came to the door to bring home baking, and my 84 year old next door neighbour is still plowing my driveway because as he explained he feels sorry for me. Plough away good samaritan.
what a great lesson here, I too, for now on, will offer my help in a more solid way, instead of just saying it. yes yes I have had many that say it, and don't mean it.
My neighbours that have been next door for 6 weeks, leave today. B.... had said in the beginning, let me stay at your house while you go out to shop etc. I did it ONCE, when I came home the guy was really short with dh and snapping at him for bothering him as he was on the internet.
And now, as my befuddled husband says, Hi B... each time he walks by, B... just rolls his eyes and does not reply, being said hi to too many times must be REALLY aggravating. THIS, from people that tell me how to take care of dh. They treat him like a bothersome pet.
They tell me to have more people over for my social life. Not thinking, about the extra cooking, cleaning, and trying to visit while watching him. I told them, if I have a social life, I want it without him, he is with me ALL THE TIME and I do not look forward to trying to visit with one eye on dh all the time.
Their help is mainly, do what WE say and it will all be fine. WHY do you let him watch tv, (silently), he needs entertainment and hobbies. (watching silent movies is the thing dh loves to do best, after I have gotten him to do morning chores)
Yes I say, and he does get this. But, when I need to work on my market produce, to pay the dang bills, I cannot be helping him to tie knots, sharpen tools, put his shoes on, etc etc.
yeah...I am TRYING TO BE MORE UNDERSTANDING OF....THEM...... what else can I do. they are gone now, I am happy.
Jang!* I was raised in Fort Langley B.C., moved here in 1980 as a young wild woman! I have a very large family in the Vancouver area. I love Hawaii, but B.C. still rocks.
I do not let other people's ignorant opinions bother me!!! When Lloyd first started showing signs of AD, everyone was happy to share what it was they thought I should be doing. I quite simply told them that any time they wanted to take over, I would pack his bags and they could come and get him. Guess what! He is still here with me and they don't dip!!!