Taking Care of Dad, 3 / Judy

We had another bad night, meaning Dad was awake all night "talking," which we can hear from the baby monitor in our room. This happens when he's having a urinary tract infection (UTI). Since September, he's had one every month or so, but this is the second one in January. They say it's because of the catheter that he's more susceptible.

Every time goes through specific stages: 1) he's wakeful and energetic for long periods. He will wake up early in the morning and go to bed late, be awake all day with no naps at all, eager to be doing exercises or go outside or go through his office. Once he was convinced he needed to look for a job. He wants to try to use his walker again. Many times he'll want to watch TV or a movie and once he was all excited about a championship football game, which he watched all through for nearly three hours. He seems more lucid even than usual.

The only thing that lets you know something may be slightly off (besides the job thing) is his complete lack of empathy--he has no idea he's keeping us awake along with him. Since he's such a sensitive, generally kind person, this is unusual. (Side note: everybody who comes in to care for him, from nurses to physical therapists to social workers comments on what a sweet man he is, always so gracious and grateful for whatever they are doing for him.) When we see the beginning of this wakefulness we immediately give him a basic antibiotic, but still he goes on to the next stage before it can take effect.

Stage 2: he starts having hallucinations, both visual and auditory. Evidently this is usual among older people with infections. Once he said there was a man singing so loudly in the living room that it kept him awake. He often asks who all these people are in his room and he has long conversations with individuals or groups "surrounding his bed." This is what happened last night. We would probably ignore it except at the same time he's anxious to get out of bed and will try everything to get around the bed rails we put up at night. Once he slithered all the way down to the bottom of the bed, then right off the end between the rail and the footboard, where we found him on the floor. He was going for a walk and was very surprised when his legs didn't hold him up. During this stage we can hear him talking all night long, like last night, so we know he's not getting any sleep.  And we know we have to check on him frequently. We give him a medication for agitation and insomnia, but it doesn't seem to do much good.

Stage 3: I don't know if the antibiotic is starting to work at this point or if he's just worn out, but after a day or two of hallucinations and agitation, he sleeps deeply for long hours. Once it lasted 24 hours and he was completely unresponsive, meaning we couldn't wake him up. It was more like a coma than a sleep. Then after 24 hours, he woke up and said he was hungry, which also happens no matter how long he sleeps.

Last Tuesday, when the first symptoms appeared, the doctor ordered a urine sample. Yesterday (3 days later), it came back positive for an infection, now we're waiting to hear which antibiotic will specifically target this particular bug. Since the broad-based antibiotic we've been giving him since Tuesday doesn't seem to be doing much good, I'm anxious to start him on something that will.

Thank goodness today is Saturday so there was no Seminary this morning and also Lloyd has the day off. Maybe we can spell each other with naps today.

Taking Care of Dad, 2 / Judy

When Dad came home from the transitional care center at the end of August, he was not doing well. He'd been very sick and was still extremely weak. He'd lost a lot of weight, mainly because he didn't want to eat anything. In fact, we had to spoon-feed him to get him to take any food at all. The only conversation he'd initiate was, "I want to go back to bed." Other than that he didn't participate. At the care center he'd refused to even try the physical therapy because all he wanted to do was sleep. He had a catheter, which we were told he'd have from now on.

We asked if he were eligible for Hospice and he definitely was, so we signed up with them. They were wonderful! A nurse checked on him twice a week, and they made sure we had the equipment we needed: we already had a hospital bed, but they supplied a special mattress to prevent bed sores. In addition we had a bedside commode and a wheelchair. Hospice is all about palliative care (just make sure they are comfortable), not about getting better.

But lo and behold, after three months, he was no longer eligible and they said he'd "graduated" out of Hospice because he got better all by himself. He got stronger physically so he could scoot from his bed to the wheelchair (although we still have to lift him back into the bed); he got his appetite back and really enjoys his meals; he's awake during the day now more than he has been in years; and he's very involved in the household doings. He loves to have people come visit and stays awake much longer when other people are around.

Bottom line is he's doing very well--until he has a urinary tract infection. Which will be the next topic.

Taking Care of Dad / Judy

I've considered blogging about this experience of being a caregiver for an elderly parent because it's such a huge part of my life right now. But I've hesitated because I didn't want to be disrespectful to Dad in any way...and some of what I could write about might be. But I've decided to go ahead for a couple reasons: I need to write about this as therapy for me, and also--maybe someone else can use it.

Some background: it's been almost fifteen years since Lloyd and I gave up our jobs and house in Maryland to return home and basically be here with Dad. He had recently been divorced and I could tell he wasn't doing well living by himself, so here we came. It was great watching 3 of my kids graduate from my old high school and of course we were able to live in the house I grew up in.

I did all the shopping, cooking and cleaning and considered it a small price to pay to be here in this place I love. Up until now Dad has been independent and a fun "roommie." Although he has gradually become weaker and more frail over the years, he could still get around with his walker. He enjoyed reading the newspaper when he woke up at 5:00 pm and then played chess on the computer or surfed the web, reading news and the family's blogs and sometimes staying up most of the night with a good book. He went to church, to visit family nearby, out to dinner occasionally and life was pretty good for all of us.

Then last summer he had a serious urinary tract infection, landed in the hospital for almost two weeks, then a rehab facility for three weeks after that, and when he came home in September (with a catheter), everything was different. The main difference is that he's immobile--his legs don't work at all. This means he's essentially bedridden although we get him up in his wheelchair for meals at the table two or three times a day. For those who've done this, they know there is a world of meaning in the words "he's bedridden."

More about this next time.