I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. Maybe it's a small thing compared to other challenges we are facing, and will be facing down the road, but I am acutely feeling the the loss of the type of freedom I describe in the blog.
Please post comments and opinions here. Thank you.
i think without a doubt almost of us can relate to the 'arms in the air' loss of freedom to come and go like before AD. this is exactly the feelings we tend to mourn over and over during the yrs of caregiving. just the other day i saw a friend stop chewing their food when i said i have forgotten how it feels to be able to say ' we're out of milk i think i'll run to the store and get some'. the little things that deprive us of normal living add up over yrs. inhome incarceration is a good term, like shackled to the house with invisible foot hold only the warden has a face of alzheimers and wears the hood of the grim reaper. the irony of your blog is today i was just discussing with my aide that next time she comes we will try to load DH into the car between the two of us for a ride out in the car - . it will take all we have to just accomplish this one small feat as DH has lost most of his walking skills. it may be the last time we try but i want to give it one last hurrah. the comparison is surreal to think we have come to this point in the journey when we were a couple who decided on a spur of the moment to fly a plane to another city for dinner and back in the same evening. things will never be the same and as ironic as it seems-and these times may still be considered 'good ones' in comparison to what can come. divvi
I remember when our first born was new born. We wanted to go out for pizza. This was a time before disposable diapers and car seats. We had to plan this first daring venture. It made us realize that freedom as we took it for granted-was over. Of course that time is long passed. My heart aches for those of you are back in those same early stages. Even now that my husband is gone I don't take for granted the joy of just leaving the house for whatever floats my boat at that moment.
Boy, can I relate to this! Even when we both had our careers, come Friday after work, we'd pack a few things and just take off - to anywhere, for the weekend. After his retirement, I was still working, but I'd get home from work and he'd have the car packed with a few things for the weekend- and off we'd go! So much fun, saw so many new and exciting places - it was wonderful.
Now...different scene. Walmart and Lowes - I know every aisle. Bummer.
Well, as most of you know, I'm a fighter for the two of us. When my husband was reduced to a teenager, we still went to all the places we had gone before AD. When he was reduced to a 5 year old, we still went to most of them, but only one trip. He was happy whereever I took him, because over the years, we liked the same things and same places. As a toddler, he couldn't wait to get in the car and go. Now, as an infant, our going is almost over. As Divvi says, it is a major planning job to take them out now. I have to want to go REALLY bad!
Of course, during my respite, I have those 5 precious days a month that I can pick up and go where I want, check out new stores and places; but it isn't the same when you are alone. Of course, that is the way it will be from now on, so I should get used to it.
I for one don't really want to go any place right now. The freedom I want is for my husband to go some place and leave me alone in our home so I can sew, watch tv do whatever I want ALONE without interruption. This just isn't going to happen any more because my husband can't drive or go out alone. I really miss my alone time. Some of you may be thinking...alone time will come and I will look back on this time and wonder why I am having these thoughts. Alone...can be lonely also, but I just want both...alone time sometimes and together time sometimes.
Judith - I need alone time to regroup and recharge. Love people and being around them but need my alone time to do me things like sew, knit, crochet and create in general. In my case, this isn't just something I like to do it is a vital part of me. If I don't get create time, I start losing it. I have found ways to help keep this under control through baking but that is only a stopgap. Sometimes a bit of gardening can help too.
Even with him in a facility, I still am not free. I still plan my day around when and how I am going to go see him. I don't go away for more than a day as I promised him I will be there for him when he passes and intend to honor that promise. Fortunately, I did not promise to visit him every day - I only promised that I would see him as often as I could.
JudithKB, Thiffs topic kind of came up on another thread about being boring..and it was touched on there. I said I feel like I am in a benevolent prison. I crave some alone time too. Yeah I know one of these days I will be along for good..and I don't mean this in that way . But dangnabiit, I can't get one dang thing done from start to finish around here for all the interruptions..not that hubby is a pain in the neck he isn't. He is rather quiet. But ther are so many doctor appointments, grocery store runs, drugstore runs , get the car tuned up.there is NO time for what I want to get done and I do not have family here..worse yet is hubby's friends dont come about as much as they used to so he gets out even less and relies on me for company. I am tired, frustrated, and DO NOT WANT TO HEAR THE TRAVEL NEWS OF FRIENDS, especially those who only pop in to tell us where they have been.I do not begrudge them their fun, but when I have so little opportunity for even a decent conversation...alone time is as much respite for us to get things done as going off somewhere else.For me it is as frustrating to have been away and to come home to unfinished tasks as it is to be overwhelmed with the day to day work load.
Mimi, as a person who now has all the alone time she could want or need, let me make it clear that there is nothing wrong with wanting some alone time when you are joined at the hip taking care of someone 24/7. Most of the time if I got some respite I went out. But I also stayed home some.
And towards the end, when he was going to bed very early, I hated the fact that I could not depend on him to go to bed and stay there.
I had a hard time listening to other people's good times in the beginning. And watching the couples walking past my house together to get together to have good times I wasn't able to join in on. But after a while, it becomes OK to hear about the stuff people do when they are having a normal life if it means that you get some social time too.
I have great neighbors. Two of the men took my husband out to lunch every month almost right up to the end of him being at home. A different one went to visit him in the nursing home this week. Could some of your friends and neighbors just take him out to lunch once in a while? That would give you a block of alone time. A lot of people want to help. They just don't always know how and you have to match the help they are able to give with what you need.
Well the one chap who came over once or twice a week announced a month ago he is not going to come over anymore...and he has stuck to it.The others in our neighborhood, who are nice folks, are gone a lot..and I mean a lot. They ask me to get their paper or take their trash down to the curb..they know the situation. HIs other pals are from a short distance away and they have the grandkids and large lots and all sorts of things...so they call now and then and now and then come by but that is it. All so sympathetic, and I have asked them to come by and I'll send them off for a bowl of clam chowder at the local fish place for lunch or just come by for coffee.. People with normal lives just dont have the time.
It's very quiet here at the moment. Dutch kids only get six weeks off school in the summer and then the country sort of shuts down. The indoor pool is closed (and there is no outdoor pool), no concerts, no senior citizens meals. Dh's brother who lives nearby is off at a campground in the Ardennes and our friends are touring in France with their camper. I'll be GLAD to hear all their stories if they ever get back! It never used to matter since this was the time of year we always did a lot of bicycling. We took the metro into Rotterdam one day this week and had lunch at a sidewalk cafe. I took my Kindle and DH was content to sit there for an hour and watch the people go by. Another day we went to see his aunt in her AL. We'll do both of those things again. Saturday went to a small lake in the dunes with DS and family. On a day care day I had two elderly friends over for morning coffee. Those are our resources right now.