Today is our 24th wedding anniversary. It is also the 24th anniversary of my husband's first kidney stone! Was that a sign of what was to come? ;)
Question----While chatting with a friend about the date and mentioning that I was wondering if we would see our 25th, she thought I was being negative and shouldn't have those thoughts.....he could 'last' for years. I'm not sure why I am so upset with those comments, but I am. She has been a lifetime friend, but again, doesn't seem to understand, She thinks I am asking for trouble by saying that he may not be around for another year.
What would you do or how would you explain what a difference a year makes?
Just venting..........thanks for listening........
Dear Ann, What I would do wouldn't be helpful as I feel the same way about these situations as you and I handle them with very little grace. I wish I had better responses prepared but so often find myself feeling such irritation at people when they make responses such as the one you mention. I understand that there is little a person can say and I've said to friends that very thing.
I really think the best thing someone can say to a caregiver is something to indicate they understand what you're saying and feeling. "This must be terribly difficult for you." or even my favorite, "That really sucks." But it seems people want to somehow "fix" our feelings instead of simply acknowledging them. They mean well but I feel usually as you do.
Personally, I wouldn't bother trying to explain. Your friend doesn't get it and all trying to explain will do is frustrate you more. You have more important things to do, for your DH and yourself. When my DH had his mental breakdown and was suicidal, I was terrified, got only 4 hours sleep in 2 days, and realised I had to get a handle on the situation--I had DH and our Daughter to take care of. I plotted every step I would have to take to deal with the scenario if he succeeded in suicide from finding him to post funeral grief counseling. Went through it a second time, if daughter found him.... After that, I knew what would need doing and that I could handle it. Also, if I could handle that, I could handle anything less drastic that came my way. A friend chastized me for doing that. She said I was preordaining it to happen. It is more than 20 years later and we are still both here--dealing with VaD now.
Ann,I'm not sure your friend would understand, but you could point out that Alzheimer's Disease, and all dementia, is a fatal disease and that the time to death varies greatly from individual to individual.
These remarks are just another example of how little "outsiders" understand what is going on. DH was able to stand and pay catch with the grandkids in August, by Oct. I had to have help getting him into the car to bring him back down to our home in south Mi. and help at this end getting him out of the car and into the house. Neither of us left the house again. By december I was using a hoyer lift to transfer him from the bed to the wheel chair and back to bed. He died in Feb. Six months from walking some and able to stand to the end. A lot of changes can take place in a year. I felt the same way as both of you when people made remarks. You're right terry "that really sucks" and it can't be fixed.
I'm not so sure. I think people can care and still say the wrong thing, sometimes terribly wrong. There is no way to truly understand this without living through it. Especially for people who are at an age where they haven't given a thought to any sort of dementia. For me it has become easier to tell those who want to understand and who do care from those who don't. And it's been quite a surprise to learn which people fit into which category.
"And it's been quite a surprise to learn which people fit into which category." Terry that statement is amazingly true. Folks who I thought mattered and casual acquaintances came through.
Bluedaze, amazing how much we lose with this disease. Since diagnosis three years ago I have basically lost my entire family, my job, my old home since we moved half way across country, and the future we had planned together. And yet I have found in a new friend love and understanding I would only have thought possible in a close family member. I often think the loss of so much of what "I thought I had" as far as support goes is the most difficult part of this journey. And back when DH was noticing or communicating about such things, he certainly noticed the absence of those he thought were friends. Sad.
Ann, I sort of had a similar experience with my siblings. I really wanted to go to Quartzite, AZ this month. In November I made the comment to them that I didn't know if he would be able to next year. Well, that comment brought the same wrath as yours. My youngest brother about bit my head off. They may not be dead, but they may not be able to be a part of the anniversary or travel or etc. Even though he is in early stages (scored 21 today on the MMSE), who knows where he will be next year at this time. They just have no comprehension nor empathy when it comes to the unknown. We have to think about it. We know the course this disease takes, just not the speed it will in our LO.
That is so true. I have worked out something to say to a well meaning friend who will without doubt say something to make me feel like this isn't happening by making this remark " I believe we all start to lose our mental strength as we get older" (duh) " My mom forgets things too, heck I forget things people told me or where I may have parked my car." I get it that she is trying to make me feel better BUT when people do this, refuse to accept what we are telling them they dishonor us. So I am going to tell her or anyone else who pulls this that "while you mean well, by not accepting the situation I have, by not accepting that I have this huge challenge now, you dishonor me". I won't be nasty about it but at some point they either have to recognize that we have a huge and sad trail of tears or they just have to get out of our way and maybe our lives. We need supportive, understanding friends, not those who tell us in their own way that we are making much ado about nothing.
Something that no one really touched on is that it isn't just a matter of how long they "can" or "might" "last". As was mentioned, many people do not realize that AD is a progressive, degenerative, fatal disease. If someone were to advise me that my wife could "last" for years I would be hard pressed not to tell them that I would rather she didn't. The end days for AD patients are not fun and only a sadist would willfully wish more of it on someone they love. My wife knew 25 years ago that this would be her end. I know from many very frank conversations with her over those 25 years that she would rather go quickly.
I haven't had to much problem with people saying they forget things but when someone does I usually say "yes, you forget things, BUT you KNOW you forgot something. My husband has no clue he even forgot anything". My grandmother is 96 and she told me her memory is not as good as it used to be but when I told her yeah but you KNOW your memory is not like it used to be she agreed.
Thunder, I know just what you mean. My mom suffered this disease too. And I did learn a lot about it because of her case. I find I try to think back to when it started and to be honest I don't think she endured it as long as your wive is. It progressed quickly and that last year, then that last 6 months and finally the very end stage which can go on for who knows how long, the things she endured! It was painful to watch and painful for her to endure. And I found myself spinning around not wanting her to suffer so and at the same time not wanting to lose her. Now I am here again, only this time with my DH and he has always been and still is such a sweet and smart and talented courageous man. I don't think he realizes he has this disease and when I try to talk about it he shuts down..tunes me out. I just hate to think of the humiliating things ahead for this fine fine man. Deb above my post here, makes a really great point and one gently put gets the point across to others who really don't get it without rancor. I have been encouraging people who don't have any experience with this disease, to just read the posts but they have been warned not to post and to also visit other sites suggested to understand what other family members endure in this sad journey.
Mimi, You misunderstood me, I didn't say she was suffering from AD for 25 years I said she knew that she would get it. My wife's mother was dead at age 59 from what was called organic brain syndrome back in the '70s. We now know that it was EOAD. My wife's grandmother was dead at age 56 from the same thing. Even though there was no genetic test 25 years ago to identify the familial form of EOAD my wife "knew" that she would go the same way her mother and grandmother did. We still do not know if the EOAD that my wife is suffering from is the familial form but we do know that she will die from it. We have an appointment with Sharon's neurologist in two weeks and I intend to schedule the genetic test then. The result will not matter for Sharon but it might be of some use for our daughter.
Thunder, we also have known that he may very well end up with it. On his dad's side all but one sister (dad's sister) died of it including his paternal grandfather. When my FIL was diagnosed in 1985 it became reality for him and his siblings. I will say we had prayer and dropped thinking about it until after his sister was diagnosed. His sister was diagnosed in 2005 at age 55, and he was showing undeniable signs in late 2006 (age 59)and was diagnosed in 2008. We thought of genetic testing but we have no biological children so it would not matter. His brother refuses even considering testing - he doesn't want to know. I doubt he will have it since he takes after their mom in heart and vascular problems.
Oh, Thunder, thank you for your clarification. I can identify with this concern to some extent. When my mom's younger brother was also diagnosed with this disease he made the remark when he was still able to take things in and understand them was " my big fear is I will die in an insane asylum." My great grandfather had some sort of memory issues and was confined to an insane asylum. My uncle died at age 74 10 years ago. Now in regard to my DH, I am wondering about his condition but none knew this could happen as most of the family ancestors are in Mexico and not much is known about any of them. But his one sister has MS and some kind of memory issues as all she does is nod and no one really knows if she understands what is being said and another has been diagnosed with AD. I am wondering what risk this all has for the kids. I was an orphan so I have NO idea what mean beasties are in my genetic code...