Tuesday, January 11, 2011

Daily living.....

Insomuch as I try not repeat myself, it still seems important to recant the obvious when moving forward, especially for newcomers to the blog.

That said, WB and I share 7 children and 12 grandchildren (the grandies). He had four, I had one, we had one and then took one from someone else (who did not deserve her and she deserved a better life). In my opinion, all kids deserve good parenting and support as it is the basis for the rest of their lives. Heck, we may not have been model parents, but it certainly wasn't for the lack of trying.

All but two live in the general vicinity of the homestead here in the Birmingham metro area. Baby Kate is in college at the University of Alabama, which is only about 45 miles from here.  She rearranges her class schedule to allow commutes for long weekends so it is almost as if she is still at home.

WB with Michelle and Kate
Michelle (the one we absconded with) still lives at home. She is an extreme help to me and at this point in time have no idea what we would do without her. She was actually in the home before Kate arrived. I believe we rescued her and now she is rescuing us.

WB with Amy
Wade and Amy both live very close and still work in and around the construction related industry. We see Amy at least once a week on her off day and it is a huge day for us all. Typically, they will go on a ride-about, run errands or do whatever it takes to get him out of the house for the day. I get him up, showered, dressed, fed, medicated and ready. Can not even explain what just a few hours alone in the house is like ~

WB with Wade and wife Angela
Wade is on-call. Wade is the son who gets the call when the wheels fall off the bus. Regardless of the time, day or night, he gets the call. May not amount to anything, but I see the day coming when the calls for help may be going out more often. (sorry Wade) If I cannot lift it, tote it, screw it in or reach it, I call Wade. He is the closest to us logistically and can probably manhandle WB about as good as I can.

Susie with her two of her four, Maddie and Dalton
Susie, WB's oldest, lives in Boston with her family and travels to Birmingham very often to spend long weekends here. Just this past weekend she was here, got really sick and then snowed in. It is a miracle she made it home as bad weather is heading east. She will be back with granddaughter Meghan around February 21st and we will look forward to it.

Then, there is Brandon ~

I have not spoken of him much in the 'daily living' archives because he is not a part of it. He is WB's youngest and only child from a second marriage that ended badly. To say there was strife for the past 19 years with him would be an understatement. For many years we patched it up only to see it fall to pieces again. At this time I forbid him any interaction with his father.

Cruel? Perhaps. But not nearly as cruel as the fallout afterward. For years I have witnessed how manipulative and engaging he can be as we open ourselves up. Looking back on the situation, I consider Brandon a source of tremendous stress for WB which only exacerbates dementia. It absolutely has played a role in the dynamic with the other children and about 18 months ago I put an end to it all. If and when he ever gets it together will be the day that it is too late to spend any quality time with WB. The decision has been made and I will not overturn it.

Mike and his wife, Joni
My first, Mike, moved to Texas and briefly attended Schreiner University. Born and raised there, I left Texas in a huff. Abandoning family, friends and an ex-husband with a new wife, Mike spent summers there with his Dad and loves it. After marrying a Hill Country girl, they settled in Kerrville  and are raising three sons. We do not see them much at all and it breaks my heart. Normally, they travel here in the summer for a few days and we go west at the Christmas break.

Me, Mike and Kate
This year, we took a longer break. UA allows nearly a month off and there certainly was not anything keeping us from it. If we overstayed our welcome, nobody mentioned it. It was craziness but they were very patient with it all. We are all convinced that WB may never be able to take that trip again. As much as he loves it, it simply disrupts the routine and the routine is what keeps me from stabbing myself in the neck with an ice pick.

I am so blessed to have the kids rallying around the 'big elephant in the room'.  That is 6 grown children to share the antics with, to vent with, to commiserate with, to be scared with. Once again, unless you spend time with him, its hard to grasp how this evolves. 

WB's speech is increasingly more affected, his gait is off and therefore he stumbles often and has to be helped through uneven sidewalks or stairs. I noticed the feet shuffling was progressing while on this last trip. Then, while out of town, there were two instances where he simply could not find the bathroom, resulting in accidents. He questions us continually on the same things and now insists that the girls come and get me, as if the answer from them is not accurate. He is sleeping less at night and I suspect sundowning is upon us. He is constantly looking for something, even if we have shown him where it is. He can no longer work the remote control, telephone or prepare himself a meal. We cut his meat and will soon be peeling his apples. Setting his clothes out and preparing everything for his shower are things I did not have to do just a year ago. Of course there is no driving even though he firmly believes everyday that he is getting better.

WB has gained 10 pounds in the last 6 months. He is constantly hungry and I am sure it is because the AD is playing tricks on him. Just this morning he had a bowl of cereal (and I have to put it up to keep him from double dipping) and an apple with peanut butter. In less than two hours he was asking, "what we got to eat around here?" Just as I am convinced that reducing his weight by 10 pounds will make him more mobile, help with the incontinence, reverse the diabetes, make him feel better ~ he is convinced I am starving him.

On our last appointment with Dr. Lee, he suggested that I get out more. He simply does not realize the stress this creates on the caretaker who stays behind and the wrath that ensues upon my return. It is hard not to argue with Bill, as he can stir up a pot in 5 seconds flat, but you learn through trial and error. Generally, my replies are "ok, lets just not talk about this any longer as it upsets you and then me and its just not worth it ~ I love you and you love me, so let's just drop it" followed by an extra dose of medicine.

We have doctor appointments lined up again for the next couple of weeks (didn't we just do this?)

The urologist because his PSA is high. The eye-doctor as he is seeing a dark spot and I fear it is a cataract. The dermatologist because the place on his face will not  heal. The neurologist for an adjustment in AD meds. I need a mammogram in the worst way so perhaps we will get that in the schedule before March. If my appointments do not coincide with his, I usually just defer and he isn't scheduled for a 'tit squeeze' any time soon.

One may ask if its all worth it. If in the end prostate or skin cancer would not do him in before the Alzheimer's, should we worry? Well, we know there will never be any surgeries because he cannot tolerate the general anesthesia and we will treat his ailments as if AD never came up. Not to mention that he will worry me relentlessly until I get him to the doctor ~ which is also textbook Alzheimer's. 

These patients will pick at something and worry over the smallest of things like digging in his ear, taking the new razor apart 10 times a day, asking us how the officials came up with the score on the football game, telling me its Wednesday when its Sunday because he's forgotten about the chalkboard in the kitchen. 

I suppose at this stage of the game it is the constant 'asking' that is so exhausting.

We are still committed to keeping him at home as long as we can. I am not Nancy Reagan, nor do I have the luxury of her resources, but know now why she did it. She had complete control over the level of care her Ronnie got, which is most likely why he lived for 10 years after diagnosis and they know now his mental faculties were challenged probably up to 10 years prior. WB will be 65 next month, he was diagnosed in October 2007 which equates to a little over 3 years post diagnosis.  Most of us agree that he has been struggling since at least 1997 following several colon surgeries and an ankle reconstruction.

WB will have to completely not know me before I would ever consider another regimen.

And the caregiver job? Thanks to reading less about the disease and more about caregiver issues, we find more and more how the stories mirror one another ~ just that the length of time with Alzheimer's in generally longer as the patient lives longer. I have a cousin who has cared for her disabled daughter for 20 years and have more adoration for her today than ever.

So, that is the update on WB and the AD. Hopefully, the postings will be light and airy for awhile as we share pictures and events. I have started a cause on facebook to benefit the Alzheimer's Association of Central Alabama and only because they need all the help they can get, primarily something geared toward young children and young adult children of patients. If the boomer population produces more and more early onset dementia cases, then there will surely be a need.

I love WB more today than ever. And, even though I am his constant person, I miss him in the worst kind of way. He would surely think this whole ordeal is 'one hot mess'.

Just Brantley

No comments:

Post a Comment

Share |