I invite you to log onto the home page - www.thealzheimerspouse- and read today's blog. I would like to know if anyone feels the same as I do, or if you've managed to find peace and tranquility living as an Alzheimer spouse. Maybe I'm just whining today. Well, if I am, I don't care. Tomorrow I won't.
Very good blog Joan...it describes my feelings perfectly. Some days I hardly know myself anymore, with the ups and downs; and just not knowing which way we will turn next. It's a wonder we don't fall off this roller-coaster car! Praying our safety bar will hold strong and secure. Take comfort in knowing we are all on this ride together, and we will help each other stay on to the end...
Joan, I agree with bella, it describes my feelings perfectly! Some days my emotions are all over the map. I go from wishing he would hurry up and die already so that I can find a life to I love him very much and start crying because I don't want him to leave me. Sometimes those extremes are all in one day. I know that it can't be healthy for me and it so far seems to be a long period of time that this is happening so what kind of physical condition am I going to be in when this is all over? No one knows... All I can say is it is a good thing that we can come here when we need to.
Joan..the roller coaster ride you mentioned has No stop button, no seat belts, and only 1 speed- fast. I think there are track sections that are also missing. And the sad part is that your spouse will be in the same seat as you, and eventually will be ejected around the hairpin turn, and you will still be riding the roller coaster until it either crashes or until someone comes to your rescue...
As always, great blog Joan. I think we can all relate *sigh
Frank, loved your comment......
I use to love roller coaster rides. Lynn too, his favorite part he always said was how tightly I held onto him. He also loved to tease me as I was one of those crazy people who loved them but would scream wildly LOL After my brain surgeries I was told I could never ride them again...Apparently Alzheimer’s doesn't care and rejected my doctors note.
Thanks for saying exactly what I'm feeling, Joan. My only roller coaster ride was at Disney in Florida with my kids. Didn't like it and tried to get out of line before we even got up to get on - kids laughed. Well, I would certainly have got out of this line too. I never once thought I'd be on this one even with AZ in the family. Not him, not this brilliant engineer with all the math ability I never could master. Now who is struggling trying to balance the check book and pay bills? But I'm on this one though and will be to the end of one of us.
Joan, you hit it straight on...I loved roller coasters,my favorite was the Cyclone in Coney Island. DH would never go on the ride didn't care for it. I never expected our lives to turn into a coaster ride of emotions. Ruth
Boy Joan-you sure spoke for me this time it is as if I wrote it myself!!! I never did like roller coaster and I would sure like to GET OFF this one.It is like when you are up in the air and they won't stop to let you off the darn thing.By the time it stops you are way to sick to enjoy anything else.Kind-of like this-by the time we get to the end of this nawful journey we won't be able to enjoy much else.
The worst part of the roller coaster ride had to be the diagnosis phase and then moving out here trying to begin a life with AD when people - even and especially family - were saying they didn't see anything wrong with DH. I was so stressed and he was enjoying a vacation like experience in this little tourist town. I wanted that vacation time for "us" just had no clue how stressful and surreal it would be having everything fall to me with few people here knowing. I can't imagine how I came across while he was perceived as such a friendly and fun guy. Add to that buying one house and totally renovating another while DH went into his drinking and aggression phase. Whoa....it makes my head spin to think about it. The family we hoped would be a support system when we moved within a couple hours of them went missing in action at best and just hurtful.
I feel less of a roller coaster now even though it would appear to most people I am on a crazy one. i just put what was to have been our dream house In VA we bought in 2005 before DX on the market in for $50k less than we paid for it and knowing we will lose much more than that. And that was just 3 months after I worked my ass off on our house here in Eureka Springs and put it on the market so that we could move into that "dream house". During that period our full home care helper padded his time sheets after i signed them costing us a lot of money for awhile and emotional distress. fought almost daily with John Hancock LTC and have gone without help much of the time even though it is completely paid for by JH simply because it is so hard to find anyone in this place. So we embarked upon our 6 week road trip to CA coast (our original home) searching again for ALFs near DH's son. a bittersweet trip I feared might be our last and enjoyed moments of great beauty in Big Sur, Sedona, NM, ... and felt a deepening of my love for DH and at lomg last moments of calm and peace.
Nikki, i have been inspired and encouraged by your "live in the moment" attitude and by the stories Divvi used to tell of the glorious (to hell with the expense) vacations with her husband early on.
joan, the peace and tranquility you mention is something I now experience in waves and moments. When the roller coaster comes to a stop I try to remember to enjoy the stillness and look at the stars. It helps I fear that I am becoming numb to the hurt and pain.
ha. and by gosh i am still paying for those glorious 'to hell with the expense' trips.. :)))) and yes it was worth every moment. do it again in a heartbeat. divvi
Me too, divvi! It was well worth it. When the trips had to stop - we needed to get another car. He hadn't been driving for several years. Well....he wanted a Cadillac! Who in the world drives Cadillacs these days! But....I knew it would be the last car he would ever ride in that we owned, so I went for it. Yeah - still paying, and paying. But every time he gets in the car, he rubs the dash, the leather seats, and tells me how much he likes our car.
Vickie--I didn't realize they still sell Cadillacs! I agree, I would have done the same. Cars were so important to my husband, and while he was in the early stage (after giving up driving) he SO wanted a convertible! But they are so impractical in this climate, I never seriously considered it. Besides, I was afraid that buying one might raise the driving issue again, and there was no way I'd take that chance.
Divvi.....glad to know I'm not the only one who will be paying these huge bills for some time to come. Just seeing DH's face while we were riding the train from Williams to the Grand Canyon was worth all the thousands of dollars this trip cost us. He loves train rides and the bloody marys didn't hurt either.
Memories are all we have. What if we hadn't been able to create them. That is why I feel so sorry for the younger people who never even got the chance to dream.
its my profound belief it helps you cope with the years to come when you have something to remember - there are so many anxious serious worrisome times during this disease, that having a few to remember for the 'good times' is so relevant and necessary.. if you can make something that you thought impossible happen while theres still time go for it -making those precious moments timeless.
Charlotte, of course that's what it sounded like didn't it? No, only the house in Virginia is now on the market. I pulled the house here OFF the market when I realized I just couldn't to VA and the tenants in that house made me an irresistable offer to continue with raised rent. Unfortunately they pulled out at the last minute so put it on the market. The house here in its tree house setting a block from the main street and all the "action" is quite desirable. I began to fear making a big mistake by selling now and since I was so overwhelmed it seemed a bad idea to make such a big change I couldn't reverse. Still....I continue to have all the issues here with not an acceptable ALF or NH, lack of caregiving help, support groups..... But just living moment by moment and trying to think outside the box....maybe rent out this house partime or something like AIRBNB does and spend time in the Bay Area near his son...or who knows. But I leave Friday to explore options in the bay area.
When I was about to sell the house here I posted some pictures on flickr under Eureka Holler. If you google "flickr eureka holler dream house" it will bring up some of the pictures. Since it is such a tourist town I'm hoping it could do well in the rental market furnished.
Thanks Divvi. I was there with DH in our recent 6 week road trip but couldn't do anything without him with me. So, we'll see how I handle 2 weeks of near solitude. First thing I'm going to do is sleep as long as I want, no alarm clock, no adorable pups, no DH.....I bet the silence will wake me up.
Joan, our roller coaster runs on minutes, not days. One minute Gord can be peaceful and compliant. The next minute he is trying to kick me for what infraction I don't know. One minute he is talking in his aphasic talk which only God can understand. The next, he is sobbing and begging, " Please, please." One minute he is sad and the next he is angry. At 4:30 today, he was quiet. By 5, he was sobbing...in the coffee shop where we had gone because,,,stupid me, I thought he was in a good phase. Now, he is back to talking his language and is being very determined. By 7:10, who knows. I feel like my mind may be the thing that will fly off the rollercoaster at the next hairpin turn.
To all of you....I envy you your good memories and wonderful times together. All the things we can't do now, he didn't want to do before. There aren't a lot of really good memories to hold me together.
Hang in there Frank. I have thought about you and yours a lot these last few days.