Hello all, I have started this CaringBridge page for Janet to help keep people informed about her condition and help me and anyone interested in helping stay organized (thanks for the heads up Mary). This first message will be kind of long so bare with me. I think everyone here known Janet was diagnosed with Early Onset Alzheimer’s disease so I won’t get into discussing her diagnoses. At the moment she is in stage 4 of the diseases progression (7 stages). I’m finding it a bit overwhelming keeping track of where I’m talking to people when organizing things or how to let everyone know about something without needing to use the maze of communication types available these days....Was that facebook messenger, a text, email? ... So I’m hoping this can be a one stop shop to help me keep all of you informed on Janet and help me manage visits and events. I was hoping the calendar function here would let people fill in there own info but I don’t think that’s the case. I might need to use some other service if I can’t get the calandre to work easily for me.
Pretty much everyone who is getting this message has offered to help in what ever way they can. It has recently become apparent that I really need to take people up on this offer. I’m hoping that by using this site and a calendar function, ether here or somewhere else will get people to commit to doing something regularly with her. It will also be, I hope, an easer place for me to ask for quick help if needed, such as me needing to run to California to see my mother or I need relief for the day. Hopefully it will simplify things without having to sending text, email and messaging to everyone and getting lost in the process.
Of late, Janet has begun to be a bit more restless. Since her short term memory is suffering, she has a hard time following threw on tasks so occupying her own time, is frustrating and somewhat anxiety inducing for her. Always looking for something or trying to remember what she was doing takes its toll. It’s not profound but it’s definitely there. This means I need to spend more time helping her find things and things to do to occupy her time. Since I’m her partner of 13 years, I’m also kind of a bore . My presence and attention is no substitute for friends. It sort of doesn’t matter what we do together, if she isn’t seeing friends she thinks she isn’t doing anything.... the lowly cast of the partner in her life ..*sigh*...
We had a wonderful response a few weeks ago from lots of people when I mentioned she was feeling lonely and hadn’t seen anyone in some time. It was overwhelming actually, but as such things go, I wasn’t good about trying to meter the flow of people. So in the end we had a super busy week+ of a visit or two every day.... then it rapidly tapered off. This is in no way a complaint, just an example of me needing to get a comunal calendar together so people can pick and chose dated to do something or just come over for a few hours and not have it happen all at once. I’m hoping some of you can find time to make a commitment for regular visits. Something like once every couple of weeks or once a month to do something with her. I realize this is hard to do and I hope to make it all be all be very flexible and easy for everyone. I am more than open to suggestions on how to do this so don’t be shy .... throw out ideas.
Since I am going to send this to everyone who has expressed an interest in helping and anyone who I think needs to stay informed on Janet’s condition or what we are doing. If I may ask a favor and if you could reply here on caringbridge that you have received the message and understand what I have been saying. I don’t need anything more than a hi, I got it. This will let me contact anyone who might have missed it or need help understanding the site or needs any clarification.
It’s going to take me a while to sort out the calendar here and see if it will work. I might need to use something else... we shall see.
I hope this will work for everyone and is anyone has a better idea, do tell... I’m all ears.
On a personal note. The last 6 or so months have been very hard for me. I have committed to being Janet’s caregiver for the duration and moved in 3 years ago to do just that. I had intended to sell my houseboat and make this my home with her as well. But over the last few months the reality of being a caregiver has been very hard on me. My own life has shrunk to a point where I no longer get any exercise, don’t see friends and have zero time to myself or interests. Even if we brought in some help a few days a week It wouldn’t really be any different. I would still be here, only someone else would cook. Spend a few hours out doing something and come back. I can’t just go and spent days at friends houses to have some space, no one likes me that much. It also really sunk in that if at some point we need to sell Janet’s house to pay the bills or whatever.. I would be homeless. Having sold my home with no were near enough money to buy anything in Seattle . All of this has really left me right on the edge of a deep depression and the reality that things are only going to get worse is something I just can’t see coping with things as is. So things are going to change with us... they must.
I had a long talk with Janet and discussed with her my difficulties with things as is. We have decided that I will partially move back on to my houseboat 3 days a week and be her caregiver for 4 days a week. She is supportive and understands clearly the difficulties I’m having and thinks it’s a good idea. This will give me some space to exercise, see friends and have the mental rest I will need to be able to continue being her caregiver in the future. If I don’t do this, I will be on the quick track to a nervous breakdown... seriously. In reality, it’s very similar to how we were living before I moved in. I spent about three days a week on the houseboat and the rest with Janet. The only difference will be the need to hire a caregiver for the three days a week I’m not with her. She hasn’t fully warmed up to the idea of a caregiver yet. But after I eplained to her why she needs one even though she didn’t think she needed one initially, she agreed.
This has been a very difficult decision for me. I told Janet I would be here for her and on some level I feel I’m backing off on that promise. But it has taken me three years to realize I just can’t do this alone, and not have at least some modicum life for myself. .....I just can't do that and stay sane, and thing haven’t even gotten bad yet. I’m hoping to make this transition within the next two months. Apparently not living on my houseboat for three years has caused everything on the boat to stop working, so it will take some work to move back in.
So that’s it for now... let’s see how this site works for us and if it doesn’t ... we will figure it out then.