Still Here
Sorry it’s been so long since I’ve posted here. So much has happened, and is happening, that I don’t have a whole lot of time for posting or corresponding.
In early March, Bob had a sudden, severe decline, and at the time, his doctor thought he might be nearing his life’s end. But apparently the dip was due to excessive doses of his meds. His anxiety had dramatically diminished, so the dosage of the med for anxiety was cut way down, and another med was stopped entirely, with the result that several days later he had rebounded to almost where he was before the decline. Thank goodness!
However, overall he continues to gradually decline, as is to be expected with this illness. He is becoming weaker in general and is having a harder time getting up from his chair. I placed a raised toilet seat on the toilet that enables him to get up more easily.
A nurse from hospice checks Bob twice a month. Also, we have a friend, John, who has been helping care for Bob virtually every afternoon for several months now. John showers and shaves Bob and also cleans him up after incontinence (when John’s not here, oh my, that’s my job and it’s sure not an easy one; it’s getting harder now, too). John also gets groceries, runs some errands and sits with Bob when I need to go out. John is an ANGEL.
(NOTE to all caregivers of people with Alzheimer’s and other chronic, debilitating illnesses: You WILL reach a point where you can no longer do it by yourself. You WILL need in-home help.)
Both John and I are noticing that Bob’s cognition is worsening. It’s getting harder for him to understand and cooperate with what needs to be done. He is quite a bit less sure of his footing, so, for example, it’s scary for him to step into the bathtub, even with John and me holding onto him. He walks more slowly now and is hunching over a bit. Advancing age and debilitating illness are definitely taking their toll on him.
Although he’s not always sure who I am, when he does seem to know me, he can still tell me he loves me, sometimes even when I haven’t said it first.
And so we go onward day by day, toward the inevitability inherent in this devastating illness, taking some solace in small victories, like the words, “I love you.”
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I’ve been so worried – thank you for updating and commenting on my blog. I wrote comments to everyone and “lost” them as I published!
Cling to the “I love You” – that’s so special. Love Jean
I’ve kept an eye out for you here just as I’ve kept you in my heart and prayers. This Alzheimer’s journey is not for sissies. My mother refused baths for eons and would physically hit on and yell at my daughter (who is primary caregiver, saint that she is) — she couldn’t articulate her extreme fear of slipping and falling. She does better somewhat now, allowing a ‘fast’ one from time to time. Her memory jumps back and forth and she can go for a nap being “fine” and wake up in a different year and know none of us. We just try to climb into her time with her and give her as much comfort as she can feel.
Bless you, darling. Know you both are in our prayers.
Shu
my father is in what sounds like the same part of this journey…thank you for sharing your story.
I came here from Jean’s blog. She linked to you yesterday. You ladies have my utmost esteem, dealing with what you have on your plates.
It has been perhaps thirty years since I have seen Bob. Just typed his name in now and found your site:
I am so very sorry to hear about his failing health but happy to know that he is being so lovingly cared for.
Can’t help but wonder, however, if it is appropriate or even respectful to blog about his health so specifically, i.e., toilet habits, etc.
Although his care can become daunting, I’m sure, Bob was always a private and quiet man and I wonder if he would appreciate being discussed in such a way.
I know that I for one will choose to remember his life and accomplishments from a more dignified perspective more in keeping with the gentle inspiration he was to so many of us.
The journey is very painful and very long. Only you know what is best to post.Believe me, AD robs every thing including dignity. Sending a daily measure of love, as usual. I’ll email you,S.
Sending love and only good thoughts your way, today and everyday.
Thank you to all for your comments, which I appreciate so very much. I don’t have a lot of time these days to post or to reply to comments, but that doesn’t mean I’m not “listening.” Thank you again. To Elizabeth Barry: As Bob’s wife, who knows him better than anyone else, rest assured that he would not be concerned about whatever I post here. He would, on the contrary, be pleased if what I write here is helpful to others. Yes, he was/is as private a person as I am; however, he wasn’t prudish or squeamish about the human body or its functions. If you ever have to care for someone who has bladder and bowel incontinence, you’ll lose your squeamishness as I have, and you’ll be grateful for any words of wisdom from others who have gone through it with their loved one. Caregiving is hard. We caregivers need all the advice and support we can get.