Tag: dementia

In Rememberance… We Heal. In Loss, We gain.

In remembering… a year has gone. Still healing from the 4 intense years, and then some. It’s surreal to become aware of the moment you realise that you must take on the role to be a parent to yourself, which I did as a kid at 7 years old, but also an adult, and to realise how far I’ve come. I had become my dad’s parent for the last four years of his life, celebrating the small joys, mourning the continual losses and felt the deep anguish, the entire experience left me the most vulnerable I’ve ever been (teamed with another huge life change in my personal life) and allowed me to grow in leaps and bounds. I learned just how deep unconditional love could possibly go, and just how deep the sense of anguish would feel like when I wished I could do more for him, and even for the others in his care residence, and having to accept that there was nothing more I could do, in my given capacity as a solo caregiver. I had to learn how to power process and stash things away, in order to keep going and taking decent care of myself, such as that it was ok to break down and cry. I also knew that I would somehow be forced to revisit these at a later time… when the time was right to complete the healing and growth process.

The first time my dad accepted my hand to help stabilise his balance when walking.
The first time my dad accepted my hand to help stabilise his balance when walking.

The revisiting came unexpected a couple of weeks ago, then subsided. Yesterday another huge wave crashed into me. I realised it wasn’t so much that I miss my father, in fact, I feel at peace that he didn’t have to suffer too long (part of the anguish), that it was long enough in his lifetime. I grieved for the hard times that I didn’t have the luxury to process,  times I felt his anguish and frustrations, and how my high level of empathy meant I would feel just too much sometimes. I grieved for the alines I had felt in that journey, how many friends who couldn’t empathise became apathetic, how I felt so hurt and lonely in those moments. I cry for remembering the unexpected people that stepped in, and the moment when a friend told me that it could be because I’ve been so strong, people rather not worry and just chose to believe “she’s fine.”

All of the emotions from then now pour out in bits, as I release them back to the earth. Grieving has been a process of finally acknowledging just how hard it was, all the feelings I felt and fought, now having the capacity and time to process it, and letting it go on a deeper level than just mentally. It made me realise that I had stopped writing after my father’s passing, and now feeling the need to write again… Thank you Vida, for your one time reminder and encouragement to me to keep writing a couple of years ago, when I stopped (dayswithfather.tumblr.com). It still stays with me now, when I start to get the inkling to do so. I have started to write again, to finally share just how hard it was, to have courage and strength to deal with one adversity in the face of another.

I won’t lie, being strong is hard and sometimes a very vulnerable place to be. I have days where I simplify feel tired of being strong. Being strong doesn’t mean that I feel less or am affected less. No, in fact, I feel more than the average being a high sensing person. Being strong doesn’t mean I don’t appreciate or need offers of support and people to take care of me, it means the world to me because that it means that they care and I feel supported. I didn’t receive the support = love from my parents growing up, it wasn’t in the cards, so this was to be one of my love languages, with words, and the other by doing and by touch, I can’t tell you how much it boosts me up when I receive genuine hugs when I’m not in a place to give one.

It's hard to watch someone you love suffer. I think dad has asthma now, struggling with his breathing :/ Hoping the doctor will make an official diagnose to help dad.
In the last couple months of his shortened life.
October 22, 2013
On this grey October day last year, I woke up in the early hours from bouts of insomnia, in a foreign land, feeling numb. The night before, after 10+ hours of traveling to reach my accommodations in Prague, I had checked the frenzy of notifications that burst from my phone once I had wifi connection, I received the surreal news. My dad had passed away. I had not been there, the guilt hit me hard. For the first time in 4 years, I had finally decided to take a long vacation (2 weeks), to getaway, to recharge. I had won yet another long and frustrating fight with the medical system, and finally had my father diagnosed correctly with congestive heart failure. It was bittersweet, as I felt relieved that he would get the treatment he needed to ease his suffering, but it also meant that his heart was failing amidst the dementia and Alzheimers. He could die anytime tomorrow, or two years, no warning. I had felt so overwhelmed with this realisation, and torn, do I cancel my holiday or stick with it? I had looked forward to visiting one of my closest friends in Czech Republic, who was also coping with an ailing father, but on top of being 8 months pregnant. I decided the life doesn’t wait, and that I had to seize the day and live life, especially since I had been running on empty by that point…

 

Back to this day last year, I had one and a half days of my holidays, the day was to re-explore the old town of Prague, and then London on a layover of 9 hours. I didn’t want it to go to waste, so pushed through the sense of numbness. It was like a dream, surreal, as I made my way out of the rental apartment, and started my journey. My mind was numb, as I feel today, unable to focus very well.

Looking over Old Town of Prague at dawn.
Looking over Old Town of Prague at dawn.
rental studio in Prague
The morning after having received the news of my dad’s passing, 4-5 hours of troubled sleep, I finally got up, wanting to capture the moment, melancholy numbness and stillness.
The enormity of that day was sinking in but in very slow motion. I got up early in the morning after a night of terrible sleep, and while looking out the window down at the Old Town of Prague, I realised, this is the first day without having any parents left, the day that life had changed permanently outside of my control. I no longer needed to take care of my father, my mission and responsibilities had disappeared into thin air. I felt lost. I remember the phrase my dad and I would say to each other in the moments where he could converse, 老樣子, he would reply after my asking him how he was doing, ‘same old’. I realised that today, it was no longer the ‘same old’.
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Dad in year one of living in a care home, having tried to trim his own hair, and having one of the good days, with some clarity… but it was also the day he asked about ending his life. Bittersweet moments.
Oddly I didn’t cry that day, and it wasn’t until I on the plane ride home the early next morning, in the middle of a movie that it came, the wave of grief hit me, like a tsunami. I was caught off guard, sitting in a window seat while other seat mates were asleep, I was trapped. I sobbed as silently as I could without choking from being unable to gasp for air in a manner that would have sounded loudly, but I couldn’t stop my body from spasming from trying to hold in all that was trying to escape. I felt bad for my row of neighbours, as I was sure that my movements would wake them, despite my efforts not to made noise.
After what seemed like eternity, it subsided somewhat, at least I could breathe now. I had managed to wake one of them, while the other slept through it all. I excuse myself trying not to have my tears drip all over them. I hid in the bathroom until the next wave subsided again, trying my best to look ok, and feeling more composed I made my way back to my seat. The two neighbours who disliked one another when we buckled in and showed it till mid-flight, now were looking at me with kind eyes in unison, guessing that the woman shared with the deep sleeping man her observations, sharing looks of compassion with one another and myself. I remembered how that somehow made me smile, a total Lucille Ball moment. They had not known what my story was, yet it had stopped their silliness and grumpiness, and the even somehow united them. The gentleman tried to make small talk to distract me, which was very kind, and he didn’t intrude, nor take it too long. I then found a movie that should have nothing to set me off or allow me to think, World War Z, and it had worked. I disliked it a few minutes in, then turned down the volume and eventually fell asleep, pondering on how I still don’t get the fascination with zombies.
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returning home from London
The rest was a blur, having made it home, having had a 20+ hour travel day with a long stopover in London and having forced myself to explore in town, feeling like that of a comatose zombie that needed hibernation for many days, and the moments of sheer frustration wanting to strangle people in the fight to deal with the mistakes the care home and funeral home made, then his immediate family and the complex situation of his young widow. It was traumatising, one last kick to remind me of what I would no longer have to deal with, one last fight for my father’s dignity, his rights, and mine…

 

Here I am a year later. I’ve built a home, not the material sense, but the symbol of it. I’ve taken risks in taking some of this year off, in career discovery and transitions, I’ve travelled solo (forcing myself to not worry about $) many a times to allow space and time into my life so that the healing process can take place. In the many losses of the last 5 years, I have gained so much. When I think about, I get emotional and leaky eyed. The experiences outside of my control have changed me forever, I have grown leaps and bounds, happiest years in my life despite the hardships and tears. With the anniversary, I now begin grieve over the childhood years of neglect and hardship, the right time has come for me to process that now and heal. My advice to everyone, do what makes you feel any one emotion or anything that makes you feel alive. It is when you feel alive, all senses firing – fear, joy, sadness, curiosity, and many more that you FEEL the happiest, and then actually are. Don’t pursue happiness, that which cannot be done. It comes from within, you have a choice, choose to be happy and live with full authenticity and integrity, choose to have a say in what you want your life to be like every day, choose to see the positives, instead of focused on the have nots and negativity. I wish you focus with happiness. Namaste.

Steps to Probate

It’s been nearly 4 months since my father’s death, and I’m in the midst of preparing to probate my father’s will. It’s been a stressful or worrisome process thus far, as the circumstances surrounding my father’s situation is unique to say the least. Even the lawyer stated this each time we’ve talked. I’m very glad to have found a lawyer that I feel trust and connected to, I think this is very important. So below is an account of what’s new as of today.

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Update and new thing learned: The Will Act is changing on April 1st of this year. The biggest change affects the beneficiaries under a will. Currently marriages supersede a will. Since father married after the last will was made, the marriage date dictates the spouse to be the main beneficiary, voiding the will, and my executrix standing, as he wanted. After April 1st, a marriage no longer supersede a will, and the will stands. Those of you marrying this year, post April 1st, may want to look further into it, particularly if you have a will and want to include your spouse.

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So after all the stress, the change in the Will Act won’t affect my father’s estate and the legal case after all. I still have a fight on my hands, but it’s looking more positive now, as I can sort of prove that it was not a true marriage of love, but rather of convenience, since they were apart for more than one year, before he had to move into a care home, thus illustrating that they weren’t being kept apart without choice.

Now the task on hand is to fight PG&T and the bank on how they could close down a joint account I held with my father, without notifying and stating the legal ramification of that. That was my father’s last try to make sure I would be the executor. Turns out the PG&T thinks it’s weird that banks do this, and that it’s wrong, but they do nothing to change it on both sides… service breakdown!

There needs to be better support for families or loved ones that need to lean on the PG&T services, while under extreme duress especially, on protecting the client and their family assets. ‪#‎BIBO‬

If any of you are going through needing or wanting to take care of an elderly parent and getting things organized as best can be. Feel free to mssg me. I’m happy to give some tips on what I was never told and have had to figure out and cope with on the go. Things I wish I had been told prior to my dad’s passing… Living wills, PG&T vs. Private Commitee, care advocacy for dementia/alzheimers parent, etc…

Back from hiatus…

I’ve been on hiatus for a while. I found that I needed to take a break and thus withdrew for a while… dad seemed to have settled into the new care facility well and for the first time in the last couple of years, I felt less guilt in wanting to step away from it. It’s more to do with his physical health degenerating now, which I’ve found in some ways harder to process and deal with.

With dad having issues associated with congestive heart failure, it has been a bit easier for the nursing staff to understand and empathize with his difficulties in feeling well, and thus having great mood swings. His heart is getting weaker bit by bit… Hands and feet get colder often, he struggles with anything more than a short stroll, water retention is an issue for extremities as well. Due to these, he is weaker overall and less stable, and often has him just wanting to sit on the ground as his strength gives out…

Its been a week since Dad was put into a wheelchair for most parts of a day. No more phone calls to report an ‘unwitnessed fall’.

It feels odd, at times I feel a slight guilt, though I know it was the necessary step to take. Its not easy having the reaponsibility to sign away a parent’s right to be, the seemingly one last bit of their freedom. But he is safe and my moments of worries for his well being have been drastically reduced. It was upto 3-4 times a week. Never knowing when it would be the call that he’s hurt himself badly from a fall.

Thank you allowing me to share with you. It’s always cathartic for me to write here, once I can reach into my writing frame of mind… it’s an ebb and flow sort of thing. For those of you that follow along because you have chosen to take on the challenge of being there physically and mentally for your loved one, I hope all has been well, and that you are getting the support you need in this journey. Kai xo

The heart aches…

After many months, on and off, if not over a year in length, the challenge to get my dad’s medical conditions addressed has finally found some results. The recent tests has my father diagnosed with Congestive heart failure. Its a relief to know what he has been suffering with, and that he will be taken better care of and more appropriately. On the flip side I’m saddened by the outlook, another wave of grief has hit. It’s a bitter sweet discovery.

many questions

I’m being asked many questions. So glad I could be here for the rare glimpse of clarity, to have the rare conversation with dad. Dementia and Alzheimer’s gave us a little break today. at New Vista Care Home

still worried

Dad had a bad fall yesterday, still worried he may have a fractured arm or elbow. #alzheimer #dementia (Taken with Instagram)

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…

at the piano

He managed to hum along to Do-Re-Mi with me today. A good day.