A while ago Beth asked me if Cheryl & I could post periodically to give you a health update on her. The idea being that the two of us have a longer memory and can update you with progression/regression over time.
Today was not a good day for Beth. She’s been feeling nauseous, ready to puke at any moment, and has had abdominal pain all day. Over the last 48 hours she’s been in the bathroom probably about 25% of the time.
She’s tired and very, very weak. When she’s weak, it exacerbates many of her other conditions. I went to a caregiver’s support group on Monday night and when I got back, Beth’s cognition was particularly bad. According to the careworker, Beth had had some TIA’s and had lost her vision. I checked in on Beth to let her know I was back. “Who are you?” she asked. “Linda,” I replied, but I don’t think it really sunk in. When she had supper later, it was served on a built up plate, where the front has a lip about half an inch high, and the back about 1.5 inches high. “Is this a dog bowl?” she asked. She has used this plate every day for the last 3 years and didn’t recognize it. I needed to explain to her that sometimes her hand doesn’t turn easily and how she could use the plate sides to help push the food onto her spoon. When she gets like that, I feel a tenderness towards her and want to protect her from the reality of her disease and all the bad stuff in the world.
This wasn’t the first time, by any means, that Beth has been confused, but it is happening more frequently. That worries me. How far will the dementia go? Will she permanently forget who I am or she is? Questions, particularly if they are asked quickly can be overwhelming for her. It takes a while for a question to sink in and then a period of time passes before she can find the words to respond. I try not to get impatient, but sometimes I do and I try to finish her sentences (often incorrectly) or I make the decision for her. This frustrates her and takes away her choice. But some days she needs me to make the decisions and I end up refusing to because I want to give her choice or I expect her to know the answer. The small questions often cause the biggest problems. How are you? Is this okay? Do you remember... They can be overwhelming. Then I see the distress on her face and I want to take the words back and keep her wrapped in a cocoon where nothing will harm her.
Tiredness and weakness causes cognition problems. Bet what causes tiredness and weakness? A lack of oxygen, erratic/slow heart rates, fluctuating blood pressure and pain are a few contributing factors. Pain is another big one. She’s still recovering from her hour of boxing last Thursday night. Ripped muscles which were starting to heal got damaged again on the weekend when she had seizures. She felt so horrible that she pressed her lifeline button - heart erratics, weak breathing, high blood pressure and seizures. When she has heart erratics she clutches at her chest, trying to rip out her heart as that is where the pain is coming from. “If I could rip it out when it’s happening, I would,” she told me again this afternoon.
Spending time in the bathroom is a necessity, but it brings its own troubles. Beth spends multiple hours on the toilet each day. She’ll have cramps and pain for hours. Her body tells her she needs to go, but the bowels don’t always do what they are supposed to. The bathroom is the warmest room in the apartment. Even with a fan on, she overheats. This causes weakness but also brings out the dementia. Half the time she needs to crawl out of the bathroom as it’s too hard for her to transfer her weight to a wheelchair. She didn’t have enough energy to get from the bathroom to the bedroom this evening. I got her onto a towel and dragged her to the bed. She passed out halfway there.
‘Are you my mommy?’ she asked when she came around. I usually only get this question after she’s been on the toilet for hours and it is late at night. At first, I used to explain that no I wasn’t, but that her mommy asked me to take care of her today. But that led to more anxious questions – where’s my mommy? Why did she leave me? I’m learning slowly. Now, I just say yes and that seems to make her feel safe – someone is taking care of her. Someone will help her to bed so she can rest.
She needs lots of sleep, and every day she keeps losing functional hours. Between the sleeping and the bathroom, there’s very few hours for her to do her work and to relax. She asks me to wake her up from naps and in the morning so she doesn’t lose functional hours, which usually means she’s short-changed herself on sleep. If she wakes up on her own it is because the pain pills have worn off or her bladder is telling her to pee out all the toxins that have accumulated in her body.
She’d love to go out and exercise – wheel a 5k circuit or participate in the Terry Fox Run. But it was all she could do today to sit at the computer and stay conscious long enough to work on emails and watch a little TV. She has goals she wants to achieve – get a blood test (we’ve been trying for two months) – write a blog (she still has one she wants to write about our vacation in July) - go boxing – go outside. It’s frustrating for her that her body won’t let her make these things happen.
I see Beth’s health steadily deteriorating. I watch the disease take over her life and change who she is and what she does. A year ago she could visit summer markets every other weekend – she’s been to two markets this summer. A year ago she could write a blog in about 4 hours, 3-4 times a week. Now it takes at least 3 times as long and she’s lucky to manage 2 blogs a week. A year ago she would be on oxygen about half her waking hours, now she’s on it whenever she’s awake.
Beth and I talked today about what the end might be like. Will the deterioration be relentlessly slow and drag out her days with no quality of life. Or will it be mercifully quick with so many multiple system failures her body just shuts itself off. We hope the latter.
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