I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. I am quite confused by my feelings, and would like to hear your opinions and comments. Have any of you had an experience like mine? Do you consider it positive, negative, or neutral?
I consider it normal. We all think we have such control--and in large part we do--but Nature is always in charge. She is tweaking your normal healthy sense of survival. One can overanalyze.
I think this is one of the crucial steps in both surviving caregiving and realizing a life afterwards.
We have no control as Betty said. This diease and nature will have their way regardless of how hard we work at caring for the wellbeing in the meantime.
The crux is taking in the full reality while keeping up the strength to help.
Each spouse here is on the road to a new life. And just as we must face and let go of the passing of our parents and others - we must face and start letting go here too.
Ideally if we had the ability, we would be transitioning knowingly through the years. Taking care of our spouse as best we can while we are starting to think and feel the reality of our life in the future.
This is much, much harder for most than I would have guessed. There is some kind of 'Stockholme syndrome' that envelops the caregiver which I think is on top of the pain and sorrow of seeing this loved one fading away and on top of facing the new hardships of all kinds that come up.
In your situation I believe your self has broken through at this point willing to face your life and even seeing things you want to do with it. The conflict is the guilt that you are: 1. Thinking this way, 2. Feeling that you are abandoning him, 3. Facing the strangeness of this new reality which is right in your face at the moment.
You should go. And you should try to have a good time. And when you come back you will be refreshed and you will have taken a step into the truth of your life. I believe that if you can bring yourself to do this you will come back much stronger and with the knowledge that as doors have been shut windows have been opened.
Step through and allow this is my strong suggestion.
I think the sadness that comes along with that new feeling is what is the worst. You finally have accepted that your husband will never again be by your side when you are "REALLY" relaxed and having fun!! For those times, you will be there alone. The truth is right there, you will never be relaxed again with him. It really tears at the heart and soul. It is the start of the letting go.
Wolf wrote: "There is some kind of 'Stockholme syndrome' that envelops the caregiver which I think is on top of the pain and sorrow..."
Interesting. I've been thinking for some time that I feel as though I have Post Traumatic Stress Disorder. If someone were to ask me how I feel I wouldn't know as I'm enveloped in layers of shock. Which is probably what keeps me putting one foot in front of the other.
My husband was in a facility for the last 4 years of his life. Obviously if he hadn't been at end stage for most of those 4 years things would have been different. I travelled alone to see our grand daughter several times, took a road trip with my daughter and took my entire family on a cruise. Even flew across the country to meet someone I first "met" on this site. I carried my phone in my hand much of the time. I did get a call necessitating some tough decisions. But I did get to do some wonderful things. My husband's decline was relentless-but not made any worse or faster because I was away. Now that I am a widow I don't regret my solo trips. This disease didn't get me, too.
My hb and I have always worked and didn't arrange vacation time at the same time except when kids were little or I was a SAHM. I had to work on the opposite coast for extended periods of time once in awhile. In fact, truth be told, our marriage isn't a "soul mate" marriage. We didn't share all the same interests. In some ways that makes his dementia easier; not much of an emotional bond or wall to build--it was built years ago by his controlling personality and behaviors. BUT perhaps my resentfulness is stronger because now I have to be with him all the time. Daughter or granddaughter will stay w/him a few hrs at a time.
Early in my Caregiving Career I took No--Zero-Zip-None time for me. A HUGE mistake. After a serious bout with Clinical Depression, I started doing a few things for me, but always with an eagle eye on DH's needs. Even after his Dx with VaDand I was told respite time was available, I didn't "get it". I asked for it to do my Dr. appointments, my hernia surgery, until a year ago May when I asked for some to cover me having 12 teeth pulled. Our Case manager responded with, "You are covered for the Dental visit and for 4 hours resite each month through Sept. when we set up the new budget." I thanked her, and after hanging up, wondered, "What the H*** do I do with that?" It took a while but I've figured it out. When he was well he hunted and fished with his buddies. During those days, I did things he had no interest in. I went to the Shipshewanna event with my sister. Danielp and I had a meetup and saw the Chihuly Exhibit at the Frederick Meijer Gardens on my birthday. A friend and I went out to lunch and vegged out by a river near here, enjoying the scenery and then riding home with the top down--never rode in a convertible before. A couple times I've just gone shopping all on my lonesome--long time since I did that either. It took a while to fix my understanding that not everything revolves on DH and his DX--some stuff does, some stuff has to, but I have a life to live too and the best way to do well by DH is to make sure I do that.
My Dh & I went on a cruise to Bermuda last fall given to us by our 4 children for our 40th Anniversary. Did we have a good time? Yes. However it was just like Joan said, I had to be with him 24/7. He couldn't have found our cabin by himself. He couldn't go anywhere by himself. It would have been nice to have at least a few minutes by myself. We were sitting in the buffet dining room & a group of ladies were leaving their table & they said goodbye to their husbands & told them that they would see them later. I almost yelled,"Wait, I want to go too!" Whenever we go anywhere out of town it's always that way. Although when we went to my family reunion last month my son stepped in & took care of his Dad while I visited with relatives. Funny thing is that on my way home from work today I was thinking about that article about emotional divorce (I think that's what it was called). I'm not there, but I think it isn't far away. Thanks for listening. Hugs to all of you.
It is part of the process....the breaking away, the letting go. If you don't have thoughts and plans and dreams for the "after", you are cheating yourself.
I always said that as awful as this disease was for my family, it gave me a chance to "grow" into my new role. I was not thrown into widowhood without any warning....I had been in training for many years. I was used to being on my own, making decisions, changing directions and making my way in the world as a single. So, when he actually died, I was already on stage....dress rehearsal was over and I knew my lines.
Sandi, I do have plan B. I will likely be bankrupt after all is said & done, BUT I will have a place to stay. Funny thing too, I'm not worried about the future.
In 3 days I am going to Disney World for 3 nights with my 18 and 20 year old kids. Jeff's sister is keeping him for the week. I hope she'll be happy to do it again sometime, but otherwise I'm going to have to engage some kind of care, because I KNOW I want to go places without him, and it no longer surprises me at all. Every time I do anything with Jeff AND kids...walk through the mall to a movie, go grocery shopping...I am exceedingly aware of how much I DON'T want to take him somewhere like Disney. He can't keep up, and there's no way for me to pay attention to anyone else.
We still have a big trip planned for October though. Just Jeff and I will be taking Amtrak across the country and visiting Santa Fe and the Grand Canyon. Because it will be just us, no kids, this can be a Jeff-paced trip.
When I said willing to face your life I meant to write 'future'. You are already facing your life which is clear because I'm writing about AD on your site.
A great part of these challenges (going somewhere interesting by ourselves) isn't actually part of AD. It's next door, closer to home which is how we see things and how we are. Our sense of entitlement, our sense of place, our sense of proper, our sense of what life should be.
Alongside that is another seperate strain with is our basic nature. Not the things above which we have 'decided' as our lives moved along - but, the core of ourselves by nature. My sister has always been aggressive and nearly fearless. I was always shy and fearful. My cousin who lived with us was always certain of her worthlessness.
My mother loved to sing. "Sing! Sing!" she would encourage. My sister would sing. I would say I don't want to and my cousin would run away and cry. That's not 'sense' of anything developed. That's core nature. This is a clumsy way to try and illustrate that we are all different with our unique nature right out of the womb and we are all different because of our sense of things which are developed over our lives as deep beliefs in how things are and are not.
Some go through their whole lives with neither of these seriously challenged. It doesn't invalidate them but it doesn't stress test them either. Spouses of AD have both their deep nature and their deep sense of what life is sieged ruthlessly.
I was the kid that screamed when my sister rocked the ferris wheel seat. I was the kid that went into the water up to my knees and then took forever to dive in. I was the guy who always worried about what others thought of me or if I wasn't doing it well enough or couldn't do whatever it was. It never took hold inside that some around me thought I was nice looking, or smart, or a good person even though those experiences were going on right in front of me and it looked outside like I was dealing with them.
This is very common I've come to learn. And it's likely one of the largest indicators of what issues we have facing this now.
I know when I changed from being in the back seat of my life and moving up to the steering wheel but I don't know why. It was a quirky moment on a highway when I was 41. For 41 years I was in the bubble of the moment and for 19 years I have pushed that bubble myself. Pushing the bubble is better. At least I think so.
Before I was the kid on the roller coaster screaming when my sister rocked the seat. Now I don't go on it because I don't like them. Before I was absorbed by what people around me thought. Now I'm absorbed by what to do with the situation. This isn't about me. This is trying to show that the biggest roadblock isn't AD. It isn't the sorrow and hardship that come with it. It's finding things within ourselves to help us.
We are what we are and we believe what we believe regardless of AD. This isn't so much about courage as it is about our own understanding about what our lives are. Life is about living. When things pass my tests then I allow it. I've gone through the shock and the depression and the suicidal thoughts. I can't see how I could have avoided much of that. I'm still in the loss and losing. I would never say I have a grip on this because I don't trust that I could judge.
But I have come out the deepest valley. I want to live. I don't agree with throwing the life I was given away. I didn't cause and can't save my wife. I insist on going to the wall to be true. I don't agree that I care for everyone else but me. I don't agree that caring about just me is selfish. I think it's the right of every person including me and I judge it necessary to learn. So I allow it. I don't know how to do that. I only know I have to learn.
If I were you I would go. And I would know it was going to be strange. And that I would worry and feel guilty and it would probably be a very mixed experience. But I would be saying to myself inside "Good for you wolf, you're trying to live as a person. And that's important to start learning here."
At the same time and in the same vein, if you feel that it will cause you too much stress right now and make you feel too bad inside - then listen to that but try and see whether it's really true or not. You don't need to prove anything. The idea is to find ways to feel good inside in the life we have. To have more of those moments. To search for them. Isn't that what we would judge others should do? And the word 'good' is open to a lot of interpretations so it will do.
I think it's a good thing. You definitely need some time for yourself. Let's face it, at this point we're doing everything for our LOs. It's so important that we don't lose OURSELVES to this miserable disease.
If you really want to go, try to make arrangements for Sid's care, and treat yourself. You deserve it. You'll come back rested and ready to go back on duty. Just go for it!
Thank you everyone for your comments. I decided not to go because I'm saving my money for a January vacation. But the main point wasn't whether I went or not, it was that I shocked myself that I never considered taking Sid. We had always done every trip together (unless it was business or a family emergency), and I would never have dreamt that I would want to go on a vacation without him. This time, however, my first thought was to go alone, and that surprised me.