I've been realizing lately that I'm thinking differently about our situation. Currently, my husband is a stage 5/6, having been diagnosed 4 1/2 years ago. In the past, I would dwell on all the changes in our lives--the losses. Recently, however, as I see the disease is progressing slowly, I've realized that I'm fortunate to have a spouse who cooperates with bringing help in and going to daycare several days a week. This allows me to continue to go to my workout classes, have lunch out with friends, and do some other activities that I enjoy. In addition, we still enjoy going out to dinner with friends, the theater, movies, etc. I know these things won't continue forever and I'm not sure why my way of thinking changed, but I'm sure glad it happened. Could this be acceptance? Has this happened to anyone else?
Marilyn, i think you hit the nail on the head. acceptance is key. the overall picture of life as it used to be is all too consuming as a loss if we look at the big picture of yesterday. taking each day and seeing it thru to the best of our ability; and not dwelling in the past or what will be our future makes for a much more tolerable existence. i have lived both ways, an aggressive volatile spouse in early yrs and a demure quite easy going one now in the latter. if you are fortunate to have the latter you are indeed lucky. it makes for a continuance of means to outside living possible. we have said it many times that we are unable to change what is happening to our lives due to the disease but we can change how we choose to live during our journey thru it. its a good thing to be able to see things clearly. divvi
When you only have one road to travel, and it is bumpy, you try to avoid the bumps; and then it climbs steeply, and you shift gears, again to try to have a nice ride; then it goes downhill and you try to brake to keep from crashing and then you have a smooth stretch where you can actually take a deep breath and plan and relax a little. All of a sudden, there is a deep pothole you didn't spot and the tire goes in and the hub gets bent and you are at all stop until you change the tire. Once the tire is changed and you start up again, a storm with high winds threatens to blow you off the road. Now you have been on this road for a long time, and you've been tired, frustrated, scared, looking for a hotel or gas station for a little relief, and none has appeared. You know you can't turn around. You know you have to stay on this road until you get to the end of it.
If you are fortunate, you find that gas station and get a little relief. The next climb isn't quite so bad, and going downhill, you find that braking is easier. Then you see the hotel, and you can take a short break. When you get back in the car, you accept what you know the rest of the journey has in store for you. You feel better going down the final stretch, because though you can see bumps at the end, you know the ride is almost over and you have built up experience and strength along the way.
That is how I see our journey....
Yes, Marilyn, you and Divvi described it very well. Our attitude has everything to do with how we deal with this and how we come through it.
I guess reading the post here helps me understand that my situation could be alot worse. She is just getting more simple minded and has difficulty figuring things out. In the beginning my life had a lot change, I have not worked in 2 yrs and I have found interest in volunteer work to keep me busy. I think a lot of it is facing the unknown and the changes that take place in your mate and your lifestyle. After a while you accept that you do not have control of anything. A bolt of lightning could strike you down while you are obsessing about the future. I think you plan for the worst and hope for the best and accept what you have no control over. Then you realise that what you have is today and that you need to be focus on the time you have now. I hope I can keep this attitude as she moves in to the later stages.
I agree with all of the above. We have to adapt to the changes in order to retain our sanity. We can't cure them but while we are on the journey with them keeping a positive attitude and a sense of humor will help us keep our health.
I have gotten used to using the abreviations such as VD for vascular dementia and I copied a letter to my daughter where I was describing Paul's diagnosis to a new friend, not involved with Alzheimers disease and daughter replied to me I had be careful about using the abreviation for VD lest people think he had veneral disease.
Mary put into words exactly what I have tried to say to others who asked me what it is like to "travel the road". It's is a trip..or a journey, you know. The obit for my husband begain with the words that read that his long journey with Alzheimer's Disease had come to an end. There are blind curves on the road, and, as Mary said, some deep pot holes along the way. But as we hold the course, it gets more predicatable and the next big turn is a little easier. It became easier when I LEARNED that he couldn't change back to who he used to be, that his skills and memory and his old self were never EVER going to get better, that he could not EVER learn how to do a single new skill or task. He got better when I LEARNED how to live with the disease and stop trying to change what was UNCHANGEABLE. No drug, no oil, no food product was going to change his prognosis. Once I accepted that fact, was when we put our carriage on cruise control, tightened up our seat belts one more time and hung on with all our might.
I was asked recently by a new Primary Care Physician if I was still...or ever had been a nurse. He said I spoke like a nurse. Gee, wonder how that came to pass. After hearing my story, he said I would certainly qualify to be a nurse..and that from what he could see, I had proven myself to be a darned good one, at that! I share that compliment with each of you...because we are all doing a darned good job at what we do...and every day, we get better.
Mary--that was a wonderful metaphorical description of our journey. What I kept thinking, while reading all these posts is that there must be something we can do to help the new caregivers who are in the early horror of dealing with the diagnosis. Of course, this website fills that purpose wonderfully, but in my experience, the majority of caregivers--for varying reasons--will never look towards the internet for advice. I'm working with the Alz Assn on educating early stage caregivers, perhaps others on this site will consider it once their days of being hands-on caregivers have come to an end? Just brainstorming here, but perhaps doctor's offices could refer the newly diagnosed to someone who has already travelled this bumpy road? I think the lack of guidance is one of the biggest problems caregivers face when confronted with our situation.
Nancy--Your comment on "no drug, no oil, no food product was ever going to change his prognosis"--I think Steve's doctor has been gently trying to say this to me from the beginning. Everything I run by him (and there has been a lot over 4 1/2 years) he vetoes as a waste of money. He has even said that I shouldn't consider any clinical trials on the basis of an improvement--only for the sake of science. I finally got the picture--just deal with what is.
marilyninMD, what you suggested, which is a peer guide to the world of dementia, is what some of the breast cancer organizations do on a regular basis. They match up the new patient with a survivor. And you are right, that is what the Alzheimer's Association needs to do too. Even at this point in my journey, boy could I used a survivor to talk to.
I was only on this site about a year before Claude passed on, but I learned so much from y'all in that year. I just wish I had known about it or had a "mentor" the previous six years. The AZ Association wasn't help and I just blundered my way through all the pitfalls or ups and downs of this horrible disease.
I think that this peer group or support group for newbies is a terrific idea but so many people just do not want to admit and definitely ask for help. I am equally concerned about new AD patients. I think the folks on this site would definitely make good support people. I have seen how the survivors in breast cancer have helped new paitients so much. Also folks who have received pacemakers or fibralators have been good peer groups to new patients.
I had missed an older couple in church and SS for several weeks and called them last week to inquire. The wife answered and said she had been there and had seen Carol and I in front of her. She said that Charles had not been coming and he was there and she wanted me to talk to him. she did not tell me his problem but he did. After a little small talk he said that he has Alzheimer's. And he had not told anyone. He really seemed to want to talk to me, since he also know about my DW and had know us for several years. We had worked with the wife in the nursury as long as we could and knew her better.
But now I wonder if a caregiver can give suport to a new patient. He has had someone in his family with AD so he is somewhat aware of the disease.
Do you think we could make got supporters for an AD patient? bill
Wow - what wonderful posts. Everything all of you have said is so true. MarilyninMD, I too have recently changed my attitude and I think it really has helped me to cope better and not stress out so much. I'm sure my stress rubs off on my DH. Mary, your description of our journey was fantastic. I'm going to copy it and keep it on my desk to read every day.
This is such a great place to come to. I always find comfort here. As you said Nancy, Salud to each and every one of us!!
Starling, Yes--a peer guide is what I mean. I (thankfully) was not aware that the breast cancer organizations use that concept, but I am constantly in awe of the work being done by them in terms of fund raising, awareness, etc. I think the Alz Association is a wonderful resource and support for us, but they need to take a look at how breast cancer advocacy organizations are spearheading their cause and duplicate it. Whether that happens or not, I know that in some way, I want to help other caregivers deal with this horrible disease. No one should have to get through it without guidance, doing everything by trial and error. There has to be a better way.
Eleven Wednesdays spent at the Alz Assoc and I didnt learn nearly as much as I did here in just a few weeks.
What helped me? This was the first and only place that told it like it is! Blunt? yes. Obscured in metaphors? nope!
No talk of miracle cures, No fake "It aint that bad" or "It will get better" No poetry about "facing the challenges"- just reality.
Thats what I wanted (and needed) and you folks gave it to me. Thank you very much!
Another thing: a special thank you to all the poeple who are at their wits end making late night postings in utter frustration over some AD situation. While you must get relief from venting and getting it off your chest, please recognize that there are many of us who are not there yet and it is YOU who get us through our day by letting us know that what ever we are dealing with, it can always be worse.
You ended my self pity real fast. Attitude adjustments are never easy, but you all got me to acceptance in just one year. :-)
This may be the problem with any lessons in "AD 101" there is too much yucky, reality stuff that the 'instructors' dont want to cover. Like baby care you gotta see it first hand to be able to explain it.
billeld---I think you could make good starters at getting support for your friend. I would consider connection him to the Alz. Assn site, where I believe there are some support service for the new patient. I'd also try connecting his wife to AS. I'd want to really think about taking on the responsiblity of mentoring him with all you have on your plate with Carol. She comes first. That said, there is nothing wrong with building and maintaining a solid friendship with this couple. Having been there and done that, you know how much contact with others means, and how it disappears as the Alz progresses.