The topic of the message at church today '30 Days to Live - I would love More'. The first person to speak was a man with stage 4 rectal cancer. Then the pastor mentioned the husband of another member who was having problems remembering the day, what was said, even people. My mind instantly went to somewhere in one of the threads it was mentioned that people seem reluctant to say the 'A' word. I emailed him after I got home and asked if the man does have Alzheimer. If he does, why did he not say that is what he has. How people use to be afraid to say cancer, now it is Alzheimer. (it was worded a little different). It will be interested to see his response.
Then he spoke about love - the love that it will take to get through the tough times. Romantic love will change with time in a marriage. Love is a verb - action. Often we don't 'feel' love, but love for the person will help us get thru. It made me think of how the only way I am going to make it through this chapter of my life is I will have to forget the wrongs he has done against me in the past. If I don't, I wont' be able to make it as a caregiver (which is the last thing I want to be towards him) and it may kill me. I say kill me cause if there is anger towards him for putting me through more 'hell', then I will enter this with resentment which we all know how it can eat away at our 'insides'. I have to let go each day any hurts to carry on.
Many of you are way into this process - you have spouses that have said the hurtful words, but you have to work hard to let it go no matter how much it hurts to keep your sanity and health. I think that is one reason I have come to this site - to draw from your experiences to prepare myself for whatever the journey is.
Plus - Art went up after church and told the pastor his diagnosis. I noticed the tears when the pastor was talking about the man with the memory problems. I also asked one of the other pastor's if there was volunteer work Art could do around the church. I told him the diagnosis and how he is bored sitting at home and I need him to get out of the house and have something to do. He said he would give Art a call.
You are so right about people being reluctant to say the "A" word. Hopefully, as people become more educated about the disease, this will not be so prevalent.
I do hope they will find something for Art to do and will call. We need to keep them busy as possible.
I'm sorry to admit it but I never use the "A" word around DH. He knows he has dementia. Keeps asking what it is. When I tell him it's his memory, he tells mehe has no problems. He's seen this web site, has read over my shoulder. He's heard people use Alzheimer's around him. Although both his neoru and PCP have told him he has AD. It doesn't get throuogh.
Everyone knows he has AD but I am just chicken enough that I don't know if I would talk about AD vs cancer when he was there. Frankly, I don't know what his reaction would be. It could be pretty loud and verbal. Like I said--chicken.
I remember when growing up how unusual it was to see someone in a wheel chair and people were "afraid" of a person in a chair. That is not so today. There was a time if a person was severely retarted they were hidden at home. That has also changed.
I educate as many people as I can about AD and what it really means to the person and caregivers. It may shock people at first but it is my hope that by doing my small bit in the education process of the public that people will start to change. I have heard many times from people that they had no idea about the disease until they had talked with me or read the regular emails that I send to family and friends.
Mawzy - there is nothing wrong with being cautious when he is around about how you speak about the disease. There will be opportunities in the future when he won't be around and you can speak about it. Our first priority is to our loved ones.
Charlotte - it would be wonderful if they could find something that your husband can do. He needs to feel useful and needed as long as he can manage to do things. When you have the opportunity, start educating people.
It is very sad that there is so much to fear from this disease - cancer used to be the same. If we all do what we can, it will go a long way.
My husband has had AD (diagnosed) for over 5 years and to date, he has NEVER spoken the word, Alzheimer's. I have said the word, his doctor has, but he will NOT. Remembering words we didn't say, I remember my mother would lower her voice when she said "pregnant" and "divorced". Mostly, they would say so and so was "expecting", but never PREGNANT. What would she do if she was alive today and had to watch one afternoon of soap operas on TV and then go to a movie. Thank God she never had to.
I speak at workshops and many people do not want to tell their loved ones that they have dementia. It's not unusual. I only wish my husband would have shared his personal wishes and given me direction when he still could. He just let it progress and I had to LEARN on my own. Call it denial...or selfishness. I think it's a little of both.
My husband has FTD and has never said it, but just the other day he told me he had alzheimers. I told him no but what he had was kind of like it. He said okay and hasn't mentioned it since.
NancyB, it may be denial or even selfishness but there is also the fact that they don't see themselves as having a problem. They don't remember! My husband was very firm in that he did not want his sons to talk to his doctors. He told me lots of times but never told them. I got to tell them and they had a very difficult time with that. Looking back, I believe that he felt that since he told me and I knew what he wanted, it was up to me to pass the information along. He did that with many things and it was a struggle as I always thought since he could tell me, he ought to be able to tell others and speak for himself. That was not the case.
Imagine this: DH told his (own) son, age 50, about 5 years ago (DH was in the mild to moderate stage of AD) that there was a one million dollar trust fund set aside for him and his two sisters. I didn't know he said that. There is NO trust fund, never has been, ... and the son doesn't believe me. His Dad can not speak well, nor does he remember. Step-son's wife mentioned it to me,.... and I nearly fainted. She asked "what happened to our trust fund?" I called our CPA (who has handled everything for DH for 25 years) and he suggested I refer them to HIM...for clarification. There was NEVER a trust, because the CPA would have known. Just one other reason for them to doubt me or anything I say. Also, gives them reason not to visit their father for over 3 years now. I really don't need this added stress, but such is the lot of a second marriage.