We're home, after escaping the cold winter for three months. It feels good to be home! I spent yesterday with my elderly mom, helping her with errands, grocery shopping and also took her to lunch. She no longer drives and has serious mobility issues. A hired helper and her adult children all pitch in to help keep her quality of life as good as it can be, given her advanced age and her multiple health problems. She is still sharp as a tack, for which I am grateful.
While I was gone yesterday, I provided Jim with some guidance on things he could do to entertain himself while I was gone for the day. He, on his own, decided to do a bit of yard work (although it is too early in the season to do much of it). Also gave him a list with two items to pick up at the store, if he decided he wanted to do so. When I got home, the items he purchased were totally wrong. I was tired and a little grumpy after having been gone from home for almost 7 hours. I'm sure he sensed the edge in my voice when I questioned why he deviated from the list.
Of course I then immediately felt guilty for the edge in my voice and suggested that we go together to return what he had purchased and get the original two items on the list. It really doesn't matter why he didn't purchase the correct items. His reality, his reasoning, and his judgement are just not the same as they were. And I need to adjust to the new normal.
We got into his car (he wanted to drive). He looked at the dashboard and fumbled his fingers between the GPS, the different knobs, and then said "wait, what am I doing?". I said "you're going to start your car (pointing to the keys/ignition). Do you want me to drive?" Of course he insisted on driving, and actually did well. But those concerns are topic for another post sometime.
He has an appointment Monday with his family doctor. I will not be going, since Jim has made it clear that he does NOT want the doctor to know about my concerns with Jim's memory. "It will just lead him down the wrong path, when there is nothing wrong."
I am constantly aware that this is our new normal, and that it is as good as it is going to get. I try to internalize this so that I can appreciate what we have now, knowing that it will not get better. Further decline is inevitable, just a matter of how quickly.
Alice http://aliceinmemoryland.com has a great blog, where she shares her experiences about her husband's cognitive impairments. In her most recent post, she writes about the many tests that can be found on the internet to test your cognitive ability. If you take one of these tests, you immediately sense the anxiety it can produce, which of course impacts on performance.
Anxiety seems to be key right now. The less stress there is, the better he does. The spiral: "He's anxious, then I'm anxious, then he gets more anxious, then he struggles and fails, and then we are both even more anxious".
The funny thing is, if you asked anyone who knows me, they would tell you that I am a mellow, low-key, relaxed person. And I still am, most of the time. It's just that these new challenges in our lives are making it more difficult to maintain this composure. Just trying to keep the peace.
4 comments:
Your description of efforts to adapt to your ever-changing new normal certainly reflects how challenging caregiving can be. Perhaps some of his anxiety and behavior stems from the fact he does recognize on some level that he's unable to function as he wants, does not understand and must become frustrated -- lots of inner turmoil.
Thanks for the link to Alice's blog. I would certainly agree that anxiety and stress when it becomes distress adversely affects our performance. I think self-administered anything has it's limits, whether taking diagnostic type tests or reading about complicated medical symptoms on the Internet then self-diagnosing. I think most tests are best administered and interpreted by professionals trained to all the intricacies associated beyond the numbers that come up in results. Awareness, then acceptance of our limitations early in their development, even if we later forget, best equips us to cope with them as I've seen with loved ones and observed with those I've encountered otherwise.
Thanks for your comments Joared! Yes, I agree that he probably does realize on some level that he cannot function at the level that he wants. It helps me to remember this.
Your comment about the limitations of self-administering diagnostic tests is quite insightful. Even though we may be knowledgeable, and even smart, we cannot possible appreciate the complexities as well as the trained professional.
Wow! I'm so sorry for all you're going through, Carole. We had a neighbor that my husband was trying to help. It took us a while to realize she had Alzheimer's. She'd been paying for things with those sample checks that banks sometime gives and kept insisting to us that she never used them. I hope you can get some care giving help somewhere. This is so hard.
Thanks Kay. Fortunately there are still some really good, "normal" times. The cognitive impairment is intermittent, usually occurring when there is some change or something stressful.
I'm grateful that he usually asks for help prior to blundering into something disastrous. This morning he asked me for help with his computer, rather than fixing it himself. Thank goodness!
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