Tag Archives: Alzheimer’s caregiving resentments

Physical Illness Strikes Memoryland

Alzheimer's Spouse Issue, Uncategorized, , , , , ,

sick

 

The laryngitis I had a month ago morphed into a hacking cough and a lot of congestion. For the next miserable, rainy week or so I grocery shopped and attended meetings I’d committed to—mostly at night and at least an hour away in Atlanta—then crawled home and let HGTV put me to sleep.

Finally after I went to the doctor who gave me a prescription. But it took another ten days, plus a change in prescription before I started feeling better. Meanwhile I had no choice but to take to my bed. What part burnout might have played is food for another post, but I had to let Ralph to fend for himself.

And he fended fine. He was very concerned. VERY concerned, in a way he never would have been when he was cognitively sound, sound. He worried aloud, What would I do without my Alice to take care of me.

Ever ten minutes he came into the bedroom to ask me if I was okay and if I needed anything. Usually I was trying to sleep actually and wished he would just leave me alone, but his heart was in the right place. He even brought me tea and toast. He ate sandwiches and the chicken soup I had (brilliantly if I say so myself) decided to make the day before I started feeling really bad. For several nights he slept in another room to avoid contagion, which was frankly also a nice respite because I wasn’t wakened during the night by his talking in his sleep.

And then the Saturday before Thanksgiving, as family began to drive up, I started to feel like myself. Hurray.

…We will skip over most of the details of the nine-day Thanksgiving we just completed this morning. Let’s just say that seven adults (all either related or married and all good at bickering), one teenager and a coughing, sneezing two-year-old trapped in a house twenty minutes from restaurants and shopping is not the best plan for holiday cheer….

Which brings us to today, or actually to the day before yesterday when Ralph started sneezing and coughing. Although so many people crowded into the house was difficult for him, Ralph loved being Bop to BabyBop and turned out to be something of a toddler whisperer, able to get BabyBop to eat when no one else could. The problem is that BabyBop is never without his germs and likes to share his food and drink with those he loves, like his Bop.

Or maybe I’m just trying to deflect responsibility since I am probably the one who got Ralph sick.

Because he is now the one in bed. And now I am the one going into the bedroom every hour or so to check if he is okay or needs anything, and he is the one saying LET ME SLEEP. A few minutes ago I told him that now I understood how he felt two weeks ago, and we laughed together at the role reversal.

Actually, he doesn’t have a fever the way I did, isn’t coughing as much as he was a day ago, and isn’t congested. But he is tired and feels as if he has a cold. This is the first time he’s had a physical problem in all the years since his cognitive impairment was diagnosed. And my reaction is different than it would have been pre-diagnosis. I realize he can’t take care of a relatively mild cold himself. I have to be around to make sure he drinks liquids and eats something and takes decongestants in a way. He is like a sick seven year old. Sweet and helpless.

And for the first time I have had to tell my daughter I can’t help her out of a babysitting jam because I can’t leave Ralph.

It’s not a big deal in a way, not leaving my husband alone when he has a cold, but it feels like a harbinger of things to come….

Oh no, I hear Ralph’s truck starting up. I would bet he is heading to the store for cigarettes (which he has not been smoking for obvious reasons). I better go catch him.

Alzheimer’s Drip by Drip by Drip

Alzheimer's Spouse Issue, Uncategorized, , , , , , , , , , ,

 

faucet jpg

 

Ralph survived BabyRalph’s birthday party, but I wouldn’t say he had a great time. The 6-hour drive down included a lot of pit stops, several barely in time. Ralph took a nap as soon as we arrived Friday afternoon. On Saturday morning I left him and my son at the AirBnB while I went over to my daughter’s to help prepare for the party. When I picked up my son later in the morning, Ralph was not interested in getting up yet. He ended up “resting” until almost one—the party was at two. The party ended at four and Ralph took another nap, until I made him wake up to eat something at nine. We drove home the next day after brunch—at which Ralph complained about the confusing menu although he ate every bit of his meal. I was exhausted, not from the drive or the baby, but from the anxiety.

Actually exhausted may be the wrong word. Living with and caring for Ralph at this stage on the Alzheimer’s spectrum—when his loss of memory and coping skills are not always obvious to others but demand careful management from me—can be physically and emotionally tiring. As I’ve said before, thinking for two is draining. But it is not the whoosh of exhaustion that bothers me as much as the slow drip drip drip:

The repetition of course, the constant re-explaining. But also the small limitations that seem to be shrinking my world an inch at a time. His growing resistance, that may or may not connect to inability, to sit through a movie or a restaurant meal with friends, or a TV program with me, or a conversation. His growing resistance, that may or may not connect to inability, to doing small chores from changing a light bulb to putting his dishes in the dishwasher. And most of all his growing resistance to leaving the farm. In each case, even as I fight to keep active in the larger world, I find myself lowering my own expectations.

It may not be fair, but I resent the limitations he’s putting on my life. I’m a healthy woman in my late 60s and I want to enjoy these years, but I feel saddled a little more heavily all the time. I can’t help wondering, given the history of a marriage in which he often didn’t pull his weight, whether Ralph wouldn’t be behaving in some of these ways even without Alzheimer’s.

At the same time, I know how lucky I am. Lucky that Ralph’s condition is drip drip drip, not the plunge downward others have experienced. Lucky that we are financially stable. Lucky that that I have the luxury of being resentful over such small problems….

P.S. Here is a link to an article from the NY Times on preparing advance directives in case of future dementia. The information is probably too late if you have already been diagnosed, but worth considering for the rest of us….. https://www.nytimes.com/2018/01/19/health/dementia-advance-directive.html?hpw&rref=health&action=click&pgtype=Homepage&module=well-region&region=bottom-well&WT.nav=bottom-well