Good morning. I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. All I can say is that if I didn't have my sense of humor, I would be locked up in a padded cell by now.
Please post comments here. I would also like to know if anyone else is "sandwiched", and how you cope with it.
The reason is WE NEED YOU, if you were not doing what you are doing. You would not have started this blog.....and we would not have the help and friendships we need. Why? I think that is why. Thank you so much Joan for all you do for you dad and husband and for us. I would be lost without you.
I'm not "sandwiched" and I don't believe I would be coping as well as you are if I were. It's all I can do to contend with one person with this disease. Thanks for sharing the telephone story. It gave me such a good laugh I read it several times.
I have had to deal with this disease now for the 3rd time on a personal level..my mom, my uncle, her brother, who lived 3 hours away and we went there often to help them or brought them up here for visits and now DH and it never gets easier. I can't imagine how you manage, Joan save for the facility where your father is. Somehow I think when this is all history for you, out of this will come a book...and it will be quite a resource using our testimonies to give a real time glimpse into the lives of caregivers, quite unlike those "text book" how to be a caregiver books that grace the bookstores now.
Joan--I share your position in the sandwich, between my Dad (beginning of VaD) and my husband (EOAD). My Dad, who is 96, is much better cognitively than my husband at 66. However--listen to this for irony: This summer, I bought a new car (first one I've ever bought). My Dad remembers this and every time we visit him at his ALF, asks how we like it. However, he also asks Steve if he likes driving it!!!!!!!!!!!!!! Here's the kicker: my Dad was the one who took me aside and told me it was time to take the keys away from Steve--he didn't feel comfortable being a passenger while Steve was driving and needed directions from me to get where we were going. I have always greatly respected my Dad's opinion on everything--it was the wakeup call I needed that the time was right and knowing his opinion gave me the backbone to do it. He also knew what a raw nerve the driving issue was, and how hard it was on him when he voluntarily gave up driving in his late 80's. So now, I just have to smile inside and say to myself "here it comes", because I know he will ask Steve every time. And Steve, a great confabulator, just responds that he likes driving the new car. Welcome to the Twilight Zone!
Here's another story from my life for you. We had 3 family weddings in 3 years. Nephew #1 in 2005; Nephew #2 in 2006; and my son Joel in 2007. My father and stepmother traveled to Chicago for the nephews' weddings, but by the time Joel's came along, they were both too frail to travel from RI to San Francisco. We did, however, bring home lots of pictures, and they were prominently displayed in their living room.
Unfortunately, my son was divorced after 2 1/2 years of marriage, and when I told my father, he was sad, but basically said what are you going to do? These things happen all of the time. In the ensuing months, he would ask how Joel was doing, and if he was recovering from the trauma. Last week, we were talking about Joel's upcoming Thanksgiving visit, and my father asked me how long Joel and his wife were together. I said - 11 years; married for 2 1/2 of those years. My father piped up and said, "MARRIED???? They're not married! When did they get married?? Why didn't anyone tell me?"
Then I turn around to the other side of the sandwich, and my husband asks me where I had been, even though I told him before I went, called him while I was there, called him to tell him I was coming home, and talked about where I had been when I got home.
No reason, Joan ... but as 'blue' noted above, if that's what it took for you to start this website, then THAT is the reason why! And yes ... you simply cannot make this stuff up!! I often think that without our ability to find some humor in all of this we would ALL need those padded cells!
Thank you, Joan; I'm not in such a bad "place." I had been really, truly, sitting at my desk crying because I'm so tired and frustrated and exhausted w/my hb's behavior and denial that anything's wrong. Getting into things as a kid does, denying it, not able to have a conversation--you all know the drill. (He is continent, though.) But I was deep into a pity party; wrote our son an e-mail outlining it all; then deleted it; what does he care? Can't do anything at a distance. Then I opened and read your blog of today. Thank you, thank you, thank you. I laughed, wiped my eyes, blew my nose and said to self: Onward soldier; you don't have it THAT bad. Back to the battlefront.
Took hb to the senior center for lunch for the first time. Dr. said getting out is good stimulation for him. About 30 folks there; hb was the last at table. Told woman next to him as he stared at plate: I'm waiting for it to change into something else. We'll go back a couple more times and see how it goes. Tomorrow we both have support groups. I'll try to keep my mouth shut because I'm not a "sandwich," and things aren't comparatively THAT bad. Do we grade on the curve?
We can never compare ourselves to someone else. Whatever is bad for us is bad for us, and we have the right to vent about it.
Marilyn,
No. He was 90 when treatments were discussed and the only one was brain surgery to put in a shunt to drain the fluid and relieve the pressure. Not an option any of us wanted at that age. The doctor and my father agreed..
I would hope that the answer to that question is there is no reason because I would hate to think that God, or whoever you believe in would do this on purpose to prove some kind of point. I think it is just a coincidence. Albeit a coincidence that we are all learning from and helping one another from. I am not glad that you are in this situation so that you can help us out but I am glad that you took this coincidence and made it into something that benefits others. Do you know what I mean? I hope so because you are a valuable person to us and in turn all of us to you I hope.
Joan--I think there is another option besides the shunt--I know someone that had it at Hopkins. But I think it still involved some sort of brain surgery, just not as invasive. Still may not be appropriate for someone in his 90's, but you could check.
I am sandwiched between my dh who had EOAD and our youngest son who has Traumatic Brain Damage from a car wreck. The son can get around but is not mentally capable of hanging with his peers. He has a speech defect due to the brain damage. He also has memory, visual, and some physcal hadicaps due to all of this. We all know about the EOAD and just like the disease is suppose to do, it is doing a good job on my husband. He seems to be loosing ground daily. But then we get to our son who is 34 now. He was 17 when he had his wreck. Now how can someone who has such a bad brain deficit be smarter than the only one in the house with no type brain damage at all? He knows all, corrects me on everything, has all the answers as to how to take care of his father. BBBBUUUUTTTTT forgets to clean his room, do things without being asked, and forgets most of the things told to him. Go figure, I think I am definitely sandwiched and don't really think I handle it well sometimes. If not for my faith that God will never allow more to happen than I can handle, and this site where I come to to vent, and learn, I would not be handling it as well as I am. Oh yeah, by the way, I am definitely noticing that our son is displaying more of the symptoms of EOAD than I like. Even tho we have not got a family history of this, both my dh and son had severe trauma to their brains and this is what seems to be bringing this horrible disease on. Hope I am wrong but the best part of this is maybe if I go thru it enough I will finally figure out "the right ways of doing things"' .......lol. Until then I am just the peanut butter in this PB&J sandwich that is holding it all together.....
I too am sandwiched : mother and husband. My salvation is my extraordinary sister. WHen it all seems much too much to handle, I call her and we laugh at the absurdity of many of the daily events. I mean we laugh out loud -- good medicine!
Another related issue is that when my Dad dies, I'm concerned that I won't really be able to grieve for him as I should. My Mom died about 6 months before I realized something was seriously wrong with my husband, and that interferred with my grieving process for her.
Wolf K....my thoughts exactly! It's difficult enough with one. I admire all of you "sandwiches" out there. Don't know if I have enough energy to do what you do. God bless you!
I can't claim to be a sandwich unless you'd consider the open-faced kind, with DH as the bread and me as the filling topped with all my health issues. But something happened this week that brought a thought into focus which I think answers Joan's question. There is no answer right now as to why our LOs have a dementia, or other maladies. But the reason we are caregivers and why we may be sandwich caregivers is because we chose to be them. When faced with another episode of stupid interfering relative-itis, the thought, 'I don't need this.' was followed by "'Why do I have to do this?' and then with "I don't have to.' When DH was Dx'd the Discharge Plan presented to me was for him to be placed in a locked unit at a nursing home straight from the hospital. I was the one who said home was the best place for gim, but I couldn't continue caregiving without help. It was my choice. If he has a big Stroke or Heart Attack he'll have to be placed because I won't be able t do his care, not my choice. But if I decide that I can no longer keep him saft and relatively healthy I can place him. If the relative' influences become too much I can place him. If I wear out I can place him. If I just plain decide I don't want t o do this anymore, I can place him. IT IS MY CHOICE.
We all have that option. We don't look at it. We allow(ed) ourselves to be drafted for this duty. We accept it. We elect it. We see it as a promise to keep. But bottom line, we choose to take it on. Once or twice, at one time or serially, we choose to be in the trenches.
And some bacon, lettuce, and tomato headed your way. That is Kraft???? No other Mayo will do... LOL. You know you are right we do have a choice. I was advised in March by the Geropsych unit to place my DH and I refused to do it. He is still at home and I am still going bonkers (is that a word?) but I'll continue to keep him home as long as I can. I just hope I know when the time comes and will be able to do it.
Did any of you read in the newspaper today a column about women who are caregivers are 6 times more likely than the average woman to end up with Alzheimer's because of all the stress of caregiving?
Bama, I didn't want to hear that either but I wouldn't be surprised at those results. My father has dementia so I already have it in my family. I am trying to ignore it for now because I have too much to do but it is always in the back of my mind. It is kind of funny but my DH tells me that I have dementia when I forget things and I tell him laughingly "You better hope not" But I really don't think it is funny, it could happen and then what do I do(Yipes)
I know your situation is not funny on so many levels I can't even imagine. But I'm sorry, Joan, I did laugh out loud--hard. It's the sort of thing we see in a movie scene that makes us cringe, but it is the way it really is. Sometimes things are just so darn funny.
Bev, I read about that some time ago. Just what I wanted to hear. I just pray that I make it through this. And God willing I will have a life at the end. If not, oh well. I look at others around me and know that I am not alone, it seems everyone is fighting something. I just try to keep moving forward, step by step.
I have to admit that it is beginning to worry me more, the fact that I could get dementia as well. But, I just read another article yesterday that said as we age we may forget things, such as going upstairs to get something and forgetting what it is once you get there, but we are much more able than a younger person to manage our affairs and make very important decisions, something a young person might not be able to do as well. That made me feel better because I really thank it's true. Maybe I do forget the little things, like a movie star's name, or even an old friend's name, but I can make those decisions I thought I'd never be able to do when I was younger. Looking back I realize there were many things in the past few years that I've really done very well. I sometimes marvel at what I've done, and I hope I can continue doing it as my DH gets further and further into this disease. One thing, though, that I've noticed lately... I feel lonely, something I've never felt before.
I agree mary75. In the past my validation came from grades, then work - promotions and usually my paycheck. Now there is no job. Even now I don't get any of the validations - thank you for what you are doing, etc., like some of you.