CHRONIC TONIC posts on Thursdays at 9 p.m. EST, it is a place to share stories, advice, and information and to connect with others with chronic health conditions and those who care for them. Our diarists will report on research, alternative treatments, clinical trials, and health insurance issues through personal stories. You are invited to share in comments (and note if you'd like to be a future diarist).
Tonight's diary by: BFSkinner
First of all thank you again for Chronic Tonic for allowing me to write my story, my handle is BFSkinner. Some of you know my story, some of you do not. Briefly I will give you the Reader's Digest version and then focus in on the main purpose of the diary tonight which I hope will be of some interest tonight and not put too many people to sleep. In 2006 I was diagnosed with SLE or systemic lupus and since then I've been on a roller coaster, suffering everything from a heart attack, numerous seizures, small TIAs, and ultimately a diagnosis of "early onset mixed diagnosis vascular dementia" which I've diaried about earlier. As a result of the diagnosis I was told that it would be best for me to move from where I had been alone from my own condo (Chicago's nw burbs) to an assisted living facility (Detroit's NW Burb's) where I have friends and family. This diary then is about what my experiences are like in an assisted living facility. They are written about my experiences firsthand and as such I can only attest to them being my own experiences at my own assisted living facility.
I was lucky enough to have family help me to find a place that was a top rated place, one that would accept both my pooties. If they did not, I would not want to make the move. I was originally from the metro Detroit area and so it was felt that I needed to go back to where friends and family could watch out and be around me. My main two problems were not eating when I should nor taking all my meds when I should. I could still work, and was working from home. So the plans were for me to keep working as long as I could, and to get Internet access from my new place, which I have done.
I moved in July of this year. There are about 100 residents or so where I live - I've never counted but if I had to guesstimate that would be my best guess. We're divided up into three groups, A, B and C based on functioning level. Group A are those that require the most care, B require some care but can do some things alone, and then Group C are pretty self-reliant. I am in Group C.
Group A people are severely demented. They are the people that do not get out nor have much contact with others. They are bathed and changed by the aids and have severe dementia. Usually they stay in their rooms and have meals brought to them. Most of the time these people are the ones that you think of as end stage Alzheimer's or other Dementias.
Group B people make up the vast majority of people here. These are people who require either physical or cognitive assistance, but require more hard-core assistance. We have both types of people with special abilities here, people with physical issues in chairs and people with cognitive issues. There are also people with both issues. I would estimate that 50 percent of people have physical issues here, 95 percent have cognitive, and then maybe 35 percent have both. Not everyone in these groups is of course in group B, but many are. People in group B run the gambit from cerebral palsy to closed head injury victims.
Group C people, of which I am in, is probably the smallest group, sheer number-wise. We are the highest functioning group and have people again with both physical and cognitive limitations, and some with combinations of both.
During the day we have 2 nurses on staff, a staff of maintenance workers, and a cooking staff. The nursing staff is also made up of 10 or so nurses aids during the day, and then at night the nurses go home and only nurses aids are on duty. Then during the off-hours, there is no cooking nor maintenance staff either. We also have an activities director who works during normal working hours. We have set activities Monday thru Saturday, 8 to 5, from card games to outings to shopping trips, to you name it. Not every single hour is filled with activities, but usually we have 4 or 5 activities planned per day.
The nurses and nurses aids perform two main functions, at least for me, which is what has changed my life around. Each day, three times a day, at 7 AM, 3 PM, and 8 PM, they knock on the door and bring me my meds like clock work. They make sure I take my meds, so I went from maybe 50 percent compliant with my meds to 100 percent complaint. And together with the cooking staff, they make sure I eat. We get two meals each day provided for us. We are responsible for our own breakfast, but they make lunch and dinner for us, and if we are not downstairs for it, the aids come looking for us. So now I do not miss meals either. I am doing much, much better. The two main issues I was having before, missing food and meds are no longer issues. People who saw me in IL and saw me in MI say it is a 180 degree shift in how I am doing. It is night and day. My doctors all say how well I am doing too. So as long as I keep it up all my levels and everything else are doing much, much better.
I am able to work, it is not for everyone. Each day I thank my friends and am happy for the science, and since I am a theist I thank G_D for another day of mental clarity. I know that the meds eventually, in the best cases do not offer a solution but only stop-gap temporary cure, but hey....if it is for 1 day or 1 lifetime I live each day each month each year to the fullest. I keep going as if there is no tomorrow. I am not pesimissitic at all. Life is too short to worry "What if" so I keep on going. If the meds stop working, then they stop working. But until then I keep on working. I just know my life is going well and I'd not be where I am at without my friends and family.
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