OUT OF THE HOSPITAL AND BACK INTO ALZHEIMER’S QUESTIONS

 

doors.jpg

The good news:

Ralph got out of the hospital on Friday afternoon seven days after he was admitted, once the infectious disease lab was able to pinpoint the bacteria and determine which antibiotic he needed. By the time he left his white blood count was back to normal and he had a sense of humor back. The nurses loved him.

 

The bad news:

The bacterium was rare and hard to pinpoint because it came from the mouth of dogs. Since the onset of his MCI, Ralph has had an obsessive need to scratch at the dry skin on his hands, to the point of breaking the skin, so it is likely the infection came from a lick for one of his two best friends.

 

Other bad news:

Ralph has to receive intravenous antibiotics daily until March 16 and because I know my limitations as a nurse, I am not attempting to give them at home. Instead, I will be driving him to get them at the infusion center at the hospital every morning. Our plans to move to Nola on March 5 are obviously delayed.

 

Other good news:

  1. 1. We get to wake up to this view again; since Ralph can’t climb upstairs at this point, I moved the guestroom bed down.
  2. 2. I have learned to ask for help and have received it from so many people. Friends will come stay with Ralph for two nights so I can go to Nola just long enough to meet the movers and set up furniture as originally scheduled. An other friend will bring the dogs down in his truck—actually what was until today Rick’s truck because I have arranged to sell it to him, one large chore off my list!

 

Both good and bad news:

  1. 1. Ralph is happy about the sale and shows no happiness about no longer driving; I am torn between being glad Ralph is not putting up an unpleasant fight and sad that one more part of his identity has been chipped away.
  2. 2. Ralph has stopped smoking cold turkey because a cat scan showed tiny nodules on his lungs that could either be a result of the infection or pre-cancerous. He will have a follow up CAT scan around the 16th to see if the nodules have shrunk. Meanwhile the doctors told Ralph no smoking and he agreed. Of course he doesn’t exactly remember but he continues to agree every time I remind him. And he is not showing any major symptoms of withdrawal.
  3. He also has not asked for a beer, which is good, but then again he has very little appetite in general, which is not so good.

 

Beyond Good or Bad

Ralph’s bout with physical infection has given me a lot to think about as I try to evaluate how much being on the Alzheimer’s spectrum might have affected his physical health and how this physical crisis might affect the progression of his Alzheimer’s.

According to medical people, being on the Alzheimer’s spectrum probably did make him more vulnerable to illness and/or caused his reaction to be more extreme. It certainly made it harder for me to detect something was seriously wrong with Ralph. I am pretty sure the signs of the infection would have been obvious sooner in someone without Alzheimer’s; after all what might seem abnormal in others—sleeping too much, inattentiveness to one’s physical state, lack of appetite, mental withdrawal—seemed almost normal if exaggerated behavior in Ralph. And he never articulated that he was feeling sick.  I don’t feel guilty that I didn’t catch on sooner; if anything I feel lucky I caught on when I did.

What concerns me more now is the ambiguity of his condition now. I have talked about adjusting to “the new normal” as Ralph and our relationship change. Now Ralph is very changed. The no smoking, no beer, no driving are in their way shocking changes. I have professed to wish for them, yet now I see them as scary sign posts if permanent. IF–I suspect Ralph’s taste for beer will return and a fight over smoking may loom in the future.

What I don’t know is whether this physical crisis will have a permanent effect on Ralph physically and mentally. That he is incredibly weak at the moment is to be expected while recovering from a major bacterial infection and while taking strong antibiotics. But I don’t trust he will bounce back. He cannot hold onto the memory of having been sick, has already forgotten the hospital, cannot remember he has an IV portal in his arm.

(In fact as I was writing this he got out of bed and wandered in to where I am typing.

What are you doing I asked.

I need to go to the store for cigarettes.

Remember, you’ve stopped.

Why?

Because of the CAT scan. They found nodules and said you can’t smoke any more.

Oh, I forgot.

And with that he wandered back to bed).

I don’t know if being weakened physically will cause him to lose ground cognitively.

I do know that our relationship has changed, at least for now. I cannot make even the small demands I did ten days ago. I bring him his pills. I feed the dogs and care for them. I tempt him with snacks every few house because he will skip eating unless I remind him. I stand at the shower to make sure he keeps his arm dry. He has no interest in the world or the people in his life. He wants me nearby as his guide—each time the nurse asked him what year it was, he looked at me to give him the answer—but we have almost no conversation. And while I might leave him to go to the store or run a few errands, I cannot imagine leaving him overnight with a life list to follow. The life list is on hiatus.

I assume some of his strength will return. But this episode has exposed his fragility and vulnerability. Also how far he has drifted from the Ralph he used to be. Whether the decline is in the last week, whether it’s permanent, or whether I just didn’t notice before remains to be seen…

11 thoughts on “OUT OF THE HOSPITAL AND BACK INTO ALZHEIMER’S QUESTIONS

  1. Thank you for continuing to share your experience here with such clarity for all, including those who may not have any first hand experience with caregiving a loved one with Alzheimer’s. Your daily challenges necessitating frequent unexpected adaptations and adjustments to your husband’s needs while importantly trying to take care of your own health requirements are to be admired. Your patience seems remarkable. I’m pleased to learn you’re able to progress with moving closer to family as you desired. I continue to keep you in my thoughts with positive well wishes being sent your way across the miles.

    Liked by 1 person

  2. So sorry to hear all you and Ralph have been through In the last few weeks Alice. I’m so very glad you will both be in NOLA soon, near your daughter and baby Ralph.

    Liked by 1 person

  3. Thank you for taking the time to share this update with us. Glad to hear Ralph is out of thd hospital and on his way to physical recovery. It sounds like you have to live through many unknowns at this point of the Alzheimer journey. Stay strong and take care of yourself. I hope you are able to continue asking for and receiving help with your move and caring for Ralph. I wish the coming days bring more good news than bad. You’re in my thoughts and prayers.

    Liked by 2 people

  4. You’ve been through a lot lately and I think you’re in for a rough spell. I hear more of that long good bye and see how you are coping with it. You are in large part alone in your house with Ralph. I would be afraid of so much change and the going it alone part. Do you long for your old life? Of course you do, but you’ve already said good bye to that. Hang in there. You are doing was well as one can be expected. I’m going to say a prayer for you.

    Liked by 1 person

    1. Thanks for your lovely words. It is a rough spell but I know life will keep changing and really, I don’t want to come across as too morose, because I’m not. I enjoy much in my life, just have to work harder to preserve my joys while giving Ralph what he needs.

      Liked by 1 person

  5. So glad to hear Ralph is on the mend though it sounds like a slow process still until he’s fully recovered physically. Sorry your moving plans have had to be delayed but you will get there. I hesitate to offer advice because everyone’s dementia journey is different and I’m the first to complain about how ‘they’ act like one size fits all. I think you will become so attuned to Ralph’s behaviour you will be the first to spot when a physical problem such as an infection arises – even more sleepy, spaced out, confused than usual – even though he doesn’t (can’t) say he feels unwell. The problem is when the medics don’t agree because the clinical signs may not be apparent. At first, with Dad, we had to wait until they’d done their tests, by which time the infection had got hold and recovery took longer. Luckily he had a very good GP who realised we knew what we were talking about and she’d start the antibiotics even before the test results came through. In Dad’s case, being weakened physically did lead to further cognitive impairment, which was why we were anxious to get antibiotics into him as soon as possible. Eating – Dad never, ever said he was hungry. If we didn’t put food in front of him he would go all day without eating. If food was there, he ate it with enjoyment. He never asked for more but if offered a second helping would often accept. Keeping his fluid intake up was difficult because he never seemed to be thirsty – so if Ralph wants a beer it’s better than not drinking. Would he notice if it was non-alcoholic beer? Your second last para brings back so many memories and it must be more difficult when it’s your husband rather than a father. It is good you will be able to go down and arrange the furniture before the move. Wishing you all the best. Just disregard whatever of this you don’t agree with 🙂

    Liked by 1 person

    1. Thanks for this genuinely useful advice. Every situation is different, but it does help to hear what you experience along the same lines with your dad–I just made Ralph drink some water; I’d definitely give him beer if he asked but at the moment he has no interest. You are such a friend…..

      Liked by 1 person

  6. Your situation reminds me of my own in some ways. My husband will snack unless I ask him if he’s hungry and consequently fix him something to eat. He doesn’t seem to get hungry anymore. When asked a question by the dr. or a nurse, he’ll look to me for the answer before attempting to speak. Sad, and yet a blessing, that when you told Ralph he no longer smoked, he quietly accepted it and returned to bed. We’re the caretakers of our husband’s body… what a strange thought.

    Liked by 2 people

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s