The Rollercoaster Ride – Advocate for a parent’s well being

The following is a recap of major happenings with the care of my dad. I had to recap to convince the potential alternate care home that the moving of my dad was warranted. His current home is in North Burnaby, and I’m trying to get him into one in central Vancouver, and preferrably one with more Asian population, as the daily food options will reflect that as well.

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July 2010 – dad moved into New Vista. no notice given, had to white lie it to get Dad to go, and slowly break the news/reality as he got settled.

Sept 2010 – dad made 2-3 attempts to leave. Apparently this is somewhat normal, but my dad is too crafty – the last one he actually climbed out of a window onto a flowerbed (3rd floor), dropped down to 2nd floor, and took staff on 2nd floor to notice him, as he could not find a way to get down to the ground floor. Dad was taken by police to emergency, as he didn’t like the nurse that was on staff that was trying to coerce him back in. Dad was in the hospital for nearly a week. They doctors there put him on Risperodone, before bedtime, with this incident to ‘calm’ him down, and so he can sleep better at nights, with less delusions. This helped, the frequency of his calling me throughout the night starts to ease off a little in the months to come.

Jan 2011 – dad sustained compression fracture in L3 while I was away on holiday mid to late January , it went unnoticed for that time, as he complained of pain only sometimes (when he was aware enough), they gave him tylenol and tried to make him walk more, thinking he’s just achy from sitting or lying down so much more. I requested dad to be seen by doctor, check his lower back or hip. Doctor came, and said there was nothing wrong, b/c he asked dad, and dad said he was fine! I pushed the matter, and check dad myself, discovered wincing pain when it gently applied pressure with fingers along the spine in the lower back, felt that it was not muscle strain, but a compression fracture of some sort. Had a nurse help me to get a physiotherapist to examine in order to get me the required X-ray requisition. I had to take dad myself and sort it out. Xray results confirmed my diagnosis. Crazy.

May/June 2011– dad finally get’s diagnosed with TIA and arterial fibrillation (this one he’s had for a long while, I thought they knew/diagnosed the arterial fibrillation when he moved in, but it was not). I had pressed them numerous times about dad’s dizziness, sudden tiredness, funny shuffling gait that comes one strong in combination, and the most frightening thing, his body stalls. Once I caught him stalled while he was swallowing food half way, and he didn’t really react, then started to choke. It took a couple of months for someone to take my inquiries more seriously. Dad is prescribed Warfarin, a blood thinner, to help alleviate some of this. It’s working. 

July 2011 – noticed that although dad is more stable physically movement wise, his behaviour was off. He seemed distant and drugged. I continually reported to staff. No new drugs. They tell me it’s just how it is. 

Sept 2011 – dad sustained a fall, I was not notified, even though I’ve repeatedly noted with them that I’m to be first contact. Instead they advised the out-of-town visiting family. Dad sustained a Wrist fracture that went unnoticed for nearly 12 hours, due to not notifying me, and thus I unknowingly ok’d the relatives with taking him out. When I met up for dinner, saw my dad not acting himself, and very distant, could see tear crusts. I examined him immediately and felt that he seemed to have a fractured wrist. Took him back to care home to get things, but they insisted on Ambulance service. Dad was not treated for the fracture until the next morning, finally getting casted at 7am. Found out after the incident that they had the week before (if I remember correctly), taken him off Risperodone. They’ve been weening him off for a a while, but no one had advised, and I never thought to ask. This could possibly explain the change in his behavior, that also included incontinence.

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Sept/Oct 2011 – After repeated reported ‘Unwitnessed Falls’ where they just find dad sitting on the floor, I questioned them regarding the falls and many other symptoms I’ve noticed in dad, in order to be more proactive about it. Then I found out that a new medication was given back in September, a week post out of town family visits and having come off of Risperidone, and I was not notified. See attached email for my own findings and requests to alleviate dad’s ‘new condition’. After a couple of weeks after reduction of dosage, dad hasn’t ‘fallen’ since. He’s more with it and engaged again. Though eating habits have slightly changed for the worse. His delusions have come back, though not as strong as before. He also started to complain of the food, sensing since he’s a bit more aware again, he’s tired of the food at times. I start to bring food with me when I visit.

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Nov-Dec 2011 –  Dad’s behaviour notably changed, and seems out of the norm, also not wanting to eat as much. Dad has also started to call me every so often again in the wee hours of the morn, yelling at me about the staff trying to starve him. Without Risperidone, some of his delusions have come back. It’s manageable though.  Nurses say, nothing notable, he’s just depressed, wanted to increase antidepressants. I’m not convinced, esp. with their track record at observing. I talked to dad and after some coaxing conversation, he admits to me complaints of aches in the mouth sometimes, in early to mid Nov. Also noticed that he is apprehensive with eating with utensils or hot food. I talked to the care staff, the odd nurse or care aid seemed to have noticed, but since dad was inconsistent in replying to their questioning, they didn’t do anything. I pressed out dental check ups, then discovered nothing had been done since he moved into the care home, 1.5 years. Was told next check up wasn’t until mid Dec. When pressed about why, nurses told me that someone in the admin must have missed faxing in this form. I didn’t want dad to have to wait a whole month before he would be seen, and also didn’t want to waste his money if it wasn’t dire (since he was running low on funds), so I checked his teeth myself, as I suspected root infection or cavity. Upon checking discovered wincing pain reactions when I tapped on two teeth in particular, I suspected root infection. I pushed for immediate attention, then nurses got a hold of dentists to call me we arranged a visit where I could be there, and it occurred the week after (as dentist was away), at my dad’s cost. To Dentist’s surprise, he confirmed my suspicions, huge cavity, so far gone, the whole was up the root, the tooth couldn’t even be saved. He couldn’t perform the procedure then, had to wait until the Dec visit, so at least prescribed antibiotics to reduce infection. Tooth was removed Dec 18 or 28th, my memory is a bit fuzzy.

I brought this up with Head Nurse, in that they should be making it up for my dad, and doing something about getting the dentist out sooner, but it was not really taken care of. the Care director refused in acknowledging it to me, and the head nurse told me that the director said “they cannot reimburse the cost of the emerg visit, b/c then they would have to do the same for everyone else.” This really irked me.

Nurses say dad won’t let them brush his teeth. I suggested letting him do it, but needing to be there, to encourage, then he does, as I have managed to do so 25-50% of the times. Something is better than nothing.

From this point on, dad really started to show more distaste for the food, started to get more picky, where before he ate fairly normal amounts and regularly. Dad’s eating behaviour is less 3 meals a day with 3 snacks, and instead smaller meals/snacks 5 times a day or such, could be his memory, could be partially because he dislikes a meal, then is starving later. He also has been more sporadic with accepting his medication ( I suspect it doesn’t necessarily makes him feel well, esp. since he’s not given enough water throughout the day), as well as hygiene care (bathing, changing diaper, clothes), and from selective nurses, those that are more ‘caring’ and respectful.

Also, my father confided in me in a rare moment of clarity, that he didn’t see the point of living on if he was stuck at this facility. He even started the conversation methodically, to my surprise. It was such a surreal and heart wrenching short conversation.

Dad: “Is this all there is?”

Me: “What do you mean dad?”

“Lliving here”

“Well dad, it’s the better option for the time being. What do you feel can be improved? I’d like to help dad” “Nothing. Just doesn’t seem much of a point”

“Not much point? What do you mean?”

“Why bother living. I rather just die then. Why drag it on?”

“I guess it’s not your time yet dad. We’re all trying to make it nice, and hoping a new ‘apartment’ will be available, closer to me, better food. I think that would help. What do you think? Just need patience”

“mm.” (chinese sound for acknowledgement)

Dec – Now: I bring him Chinese food of all sorts, when I can, he eats like a hungry man, with a good appetite, sometimes frightening me with how starved he is. I parcel up portions for other days, so when it’s been a bad food day, that they can give him what I packaged once a day, so at least he’s eating something more nutritional and comforting. I also experiment with in-house prepped meals, some of which he will eat, such as spaghetti, potatoes, meats… basically food with more normal proper texture and fresh cooked (not frozen heated up fried patties and mushy veg). Most of the time, he eats bananas if he doesn’t like the food there. He’ll even go steal bananas. They have him taking Boost, to supplement. Nurses he relates with, he’ll more likely eat and comply with other tasks. He’s lost weight and more occurrence of allergic swellings, that seem like water logging, as well as rashes all over the body (hives) sometimes in large patches. I feel that he’s not drinking enough water either. Tried repeatedly to get staff to give him warm-hot water, and say it’s to help with allergies, flush it out, as he will chug it then, but they still push sugary juice, and he refuses the medication+juice all together.

Feb 2012 – dad has serious nose bleeds. I wasn’t called until the second occurrence, where it was already an hour into his second nosebleed that would not stop. b/c I was unable to come out, dad was sent to emergency to be treated. Nasal cauterising is performed. Nose bleeds still occurred, a little less bad. I suggested applying vaseline to help soothe, as it appears to me that its dry, and allergy season, so much itch and so he will pick his nose, plus his nails are not cut well, jagged. Also requested them to give him allergy pills, as he normally takes them for spring when allergies get bad, also to leave the large vase of water by the heater, left by me, to be filled up, so to humidify his room a bit. Nose bleeds stop finally after 1.5 weeks. Also noted, he complained of pain/aches in his lower abdomen/groin area, talked to head nurse. Nothing seemed to come of it.

Mar to April 2012 – dad’s swellings gets more frequent, eyes get gummy, with skin around eyes appearing red and dark. Allergy pills are the only thing that helps to reduce it a bit, despite my asking and my email asking for more attention to this, and suggesting if doctor can look at blood tests for Angioedema or something proactive. Nothing was done, just that he can order allergy testing on dad’s skin, but I would need to take him. My dad and I have been through this, found it useless, as for both of us, skin test only showed we were sensitive to almost everything on our skin, and the food allergies we know for sure that exists, scored low on the sensitivity. I also remind them to watch his sugar intake, as sugar seems heightens allergy reactions (so much of their snacks are sugary, juice, cookies, sandwiches), as it does for me (we have very similar sensitivities), and help him to drink more water. Dad is so dry and scaly. 2 weeks ago, the nutritionist calls to inquire, finally someone taking a proactive look, so I recapped all that I shared with nurses, hoping the nutritionists can get the points across. Not sure where this is at right now. As I took 2 weeks off to focus on personal matters.

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The fight continues. As of this early afternoon, dad’s move to the alternate care home was rejected. based on him being a risk, when he sometimes gets physically aggressive when he’s agitated by certain nurses/care aids that don’t get along with him (aka, insensitive, disrespectful, condescending, or rushing). He’s only 5 feet tall now, and weak with self imposed malnutrition, so that doesn’t seem to be completely valid reason. If he wasn’t suffering from discomfort, cared for more proactively, he would be in a better place emotionally, which would mean to me, less agitated, eating better (with better meals offered) and thus less aggressive too.

Let’s see if I can get him into another facility…

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