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Friday, February 18, 2011

Update on Dad 9 (and other stuff):

I went to see Dad at about 7:30am on my way to work. I spent about an hour and a half. He was already up and had his shower at 4:30am and breakfast at 6:30am (dhall, spinach and roti). We had a cup of coffee together and he had some toast and jam.

He is a bit more settled today and is now having his meals with the rest of the residents - a much more pleasurable experience. He really likes his student nurse Karen and she takes good care of him. Chandal his Health Care Aide is also quite good to him.

I think he has thrush again. He had a very bad case of it back in early November and by the time it was diagnosed, he was in quite a bit of discomfort as it had already moved to his throat. This time, the nurses were much quicker to diagnose it. The doctor is coming in later today to confirm that it is indeed thrush, and will prescribe the appropriate medication.

Can I just explain how it was almost disastrous the last time? He was complaining of a sore mouth for days and finally he went to see a dentist thinking that it was a sore tooth. Well the dentist gave him a check-up, charged him for the check-up and told him that he had several cavities and would have to get them filled or extracted. She did not want to do the fillings or extractions because he had just completed a heavy dose of radiation in the middle of October and she was uncertain of how to proceed. At no time after poking around in his mouth did she determine that he had thrush even though it was evident. She referred him to a specialist who determined that he would have to have all his teeth extracted and again, at no time did the specialist determine that he had thrush. He then went to his family doctor who thought it might be thrush and gave him some meds but by this time, days had passed and the thrush had spread to his throat, making it almost impossible for him to swallow. He called me at 6:05am that day to tell me that he could not swallow so I got dressed and went over. The previous evening, Padi (Robin’ sister who is a nurse) thought that it might be thrush, so I went on the internet and did some research. By the time I went over and checked his symptoms, they were all there. Mom started giving him the meds for thrush and in a few days he was on his way to feeling better. By the end of two weeks, it had cleared up.

In the meantime, he was scheduled to have all his teeth extracted at the beginning of December. He was in such a weakened state by the end of November (from the radiation treatments in October, the flu a week later and thrush a week after that), that I made a call to his family doctor to say that I did not think it was a good idea to do any extractions for a number of reasons including that he was too weak, his mouth would not heal because it is a radiation site and that his mouth was not hurting because of cavities but because he had thrush which should have been diagnosed by the dentist, the dental specialist and his own doctor. The doctor agreed that Dad had bigger things to worry about besides a few cavities so I called the specialist and cancelled the extractions. That would have been a major nightmare, a really major nightmare for him. Fortunately, I had the presence of mind to put two and two together. That reminds me about a previous scenario with his teeth again which I write about in another posting. The message here: Be an advocate for your loved ones or they are going to be at the mercy of a flawed health care system And if you are the one with the health issue, make sure you have an advocate.

On a bright note, Bena is coming for a visit tomorrow so Dad should be excited about that.  She'll go directly from the airport at about 10:30am and I will pick her up about 2:30pm. Mom and June went today and they said that they had a good visit with him.  he has some soup and a slice of toast at lunch but didn't feel like much else.  I'll go home today and make something that he'll like for supper tommorrow - but it will have to be non-spicy since his mouth is sore.  That man has the strength and fortitude of ten men and the amount of adversity that he has endured would certainly have demolished lesser men.

That really was a bright note!  Take care everyone and have a great weekend.  We'll be presevering in -20C with windchills of -30C.  Is it Spring yet? Oh well, at least I am not in Australia. 
happy weekend...
sandra

Thursday, February 17, 2011

Update on Dad (and my "special" test)
I went to visit Dad on Tuesday afternoon. His friends Tom and Megan went to visit and he said they spent about two hours with him.  They live conveniently across the street from the hospice.

The hospice is trying to work out a schedule for his care so I came up with a tentative schedule that I discussed with them first before I talked to him about it. I wanted to make sure that the times I had on the daily schedule would work for them and for him . They said that the schedule I prepared would work well for them but the only thing they were concerned about was that he was very adamant and reiterated on a number of occasions that he needed help eating and he could not do it on his own.

There are a few reasons why I think he is saying this. I was sure that he was quite capable of eating on his own as witnessed by me and the rest of the family at dinner on Sunday with him. I thought he was using that as an excuse to have someone stay with him in the room because his meals were taking almost an hour to eat which is not normally the case. They said that he likes to visit with whomever is feeding him so he extends the meal time long past what is necessary to eat.

Another reason for insisting that he needs help is that he does not want to go to the dining room and eat even when the nurses encourage him to do so which makes eating in his room a lonely task. He also refused to eat with the other residents and refused to go out into the common areas by himself. So he is isolating himself in his room which makes the situation worse. I then had the task of talking to him about his behaviour (the nurses are not quite sure how to handle him yet) so I had another 90 minute conversation with him where I called him on his seeming inability to eat on his own. He insisted that he could not feed himself. I told him that if he is capable of shaving himself every morning with a razor (which requires more skill than putting some food in his mouth) he can eat on his own. He kept insisting that he could not do it and when he tried the food fell on the floor or he had difficulty finding his mouth. He kept repeating that so I had to up the ante. This is like a crazy chess game!!

After telling him that I saw him eating dessert on his own on Sunday (with a fork no less!) and that he had no difficulty finding his mouth or making to food fall on the floor, he told me to “Go and shout it on the roof top.” That’s when he knew he was busted! Is this a game or something – he makes a move and before he does that, I have to anticipate what his next move is going to be and block him? I told him that I had no patience for his sarcasm and he ought to know that I know every one of his tricks and I was sure this was one and he was using it to make sure that some staff member will stay with him all day. His next request? “Okay let me go home and I’ll be able to manage by myself.” I told him that he overplayed his hand when he pretended that he could not feed himself because it tells everyone that he really is not capable of taking care of himself and most definitely not at home.

He then started with the tears and the trembly voice about how lonely he is and how he is surrounded by four walls all day and he just waits for someone to visit. I also know that’s a trick to make me feel guilty that has worked many times in the past but it wasn’t working on Tuesday. He stopped as quickly as he started when I said that the “pity party” will have to other attendees but him and if he continues with that, I would leave and return when he was in a better frame of mind and not trying to make the whole family feel guilty. I told him that I would rather that he was not in the hospice and frankly, I would rather he didn’t have to deal with cancer but he does and we are doing the best we can do to make the time he has left a good experience. He wanted to know why God doesn’t take him now and my response was that God will take him when it’s his time and in the meantime, he has to stop acting like he is already dead.

As if on cue, the Health Care Aide came in with his dinner tray and asked him if he wanted to eat in his room or go to the dining room. Imagine my surprise when he said that he would go to the dining room!! He started eating his dinner and when he saw me looking at him his hand started to tremble so much that I thought the spoon would turn upside down. It took an almighty will not to take the spoon from him and start feeding him but I didn’t and low and behold, he ate the whole plate of food by himself and started on dessert when I left.

By the time I had been home for a couple of hours, I was mentally exhausted. I really do know every trick in his book but I also know his moods and his needs. I know that when he is really sick, he does not complain – not at all. It’s only when he is feeling okay that he tries these stupid tricks. That’s why I have to pay attention to the smallest changes in his routine, meals, meds and just about everything else. I feel bad for telling him that he cannot come home but I know we are not capable of meeting his needs and the reality is that I feel like in order to accommodate him wanting to come home, I am killing my mother with the stress of the situation. Is that the proverbial “rock and hard place?”

On a much brighter note, I had a colonoscopy yesterday (yes there is a bright note about that) and everything was fine. I requested it from my GP as a preventative - not because anything was wrong but more to make sure that I am managing my health. For anyone who has had one of these, the worst part is the preparation. I had to fast for 33 hours in total (except for clear fluids). I like my food too much so I won’t be going on a hunger strike any time soon. Of course when the nurse tried to give me the needle for the IV, she could not find a vein on the back of my right hand and the thing you don’t want a nurse to say while she is shoving a needle in your hand and wiggling it around is “oh heck, it blew up!” She tried and was successful on the left wrist but that was painful on the right hand. I was wheeled into the operating room and the nurse said that she would give me a sedative which would keep me awake but relaxed for the procedure and I could see what they were doing on the monitor. I told her that my body has no tolerance for sedatives and anaesthetics and by the time I was done, I was out like a light and waking up about 90 minutes later. When I got home, I had something to eat and spend the rest of the night sleeping. This morning I am finding my tongue and feeling a bit more like myself with a very sore right hand.

Mom and Sophie went to visit Dad yesterday and they said that he was up and dressed and was in a pretty good mood.  He even ate by himself. Ernie the volunteer who plays a guitar for the residents, is going to have to learn "Hey Dood" (get it? ) so he can play that for Dad.  He played some Elvis (Love me Tender) and one other of Dad's favourite songs.  I called this morning at the hospice and his nurse said that he was up and about in the sunroom and visiting the nurses at their station.  She said that she was pleasantly surpirsed that he had progressed to being able to eat by himself.  What a difference a day makes!  That's the father I know who was hiding in that sulky attitute for the last week.  Pretty soon, he'll vacuuming the floors and setting the dining room table (I hope).

This was long update but like I said, I will only post something when I have something to say - like talking about a colonoscopy! If you are over 50 and have not yet had one, please ask your doctor to schedule one. A very good friend of mine passed away in December from colon cancer which he did not know he had. Maybe a colonoscopy earlier may have saved his life.

Take care all.
Have a good weekend.
sandra

Sunday, February 13, 2011

Update on Dad
Yesterday Dad had several visitors.  Fist Mom and her friend June went from 10am-1:00pm and so did Karran.  Just after they left, 3 other friends - Meena, Julie and Savitree - from the Dharmic Sabha Mandir went to visit and the took some food and parsad.  After they left, Sophie and Sharm went to visit from 3:30-6:00pm.  Of course dad had to ask where I was so Sophie had to give him a little pep talk that he has to appreciate those who are there and stop asking for Sandra.  He said I had not visited for 3 days but Sophie reminded him that I was there on Thursday.

We took Mom to the theatre for the matinee at 4pm.  The play "The Shunning" was very sad but really well done.  We went out for dinner (and bought some sweets to take for Dad) after and then to a Chinese supermarket where I stocked up on some nice fresh fruits and veggies.

This was a very busy day of cooking and preparing for this afternoon's visit to the hospice.  I cooked some of the veggies, I made some curried fish (gilbacka) with eddoes and okras, rice, and some soup with homemade chicken broth, eddoes and zuchini.  I took the curry, rice and soup for dinner and Sophie made a super creamy rice pudding. 
When we arrived at the hospice, we warmed up the dinner and had a feast.  Dad really enjoyed the curry but he found it a bit spicy even though I didn't add any pepper (this from the man who could eat a raw scotch bonnet pepper without flinching and now can't handle anything spicy at all). He even had a scotch with Robin (well about  a tablespoon) but he said that he could have a "tup" every once in a while.  I don't know if that was even a "tup" but he thought it was enough.  He enjoyed the almond barfi, carrot barfi and the ladoo.  When he was done he made sure to check to see if there was any curry left over and to leave it in his fridge so he could have it for another couple of meals.  I thought the roast beef and gravy that was on the menu sounded appealing but he quite enjoyed what he was eating. 

He told me that yesterday Julie asked him if he could choose one favourite dish to eat what would that be and he said gilbacka curry.  I told him that I was quite clever to read his thoughts in anticipation of his needs so that's why I made gilbacka curry.  Good thing for an oversize freezer which appears to grow large quantities of food on its own (not really but I have to stop buying excesses of everything as if I think there will be a famine in the next week). 

In terms of his physical health, his breathing is getting a bit more laboured and he is still on the oxygen but doesn't remember that he uses it at night too. He has developed a bit of a cough but we had some cough syrup at home so Mom brought it for him.  His feet were quite swollen but he is now wearing his compression stockings so that has helped as well.  We'll likely have to get a larger pair though because the swelling is more than he's had before.  His lips are huge and look like they were stung by several bees but I think it's the tumour growing and sometimes it does not allow the lymphatic fluids to drain as they should so they back up into his face.  The way I am saying this, you'd think I have some expertise in this but it's mostly my experience dealing with this cancer for the last 5 years. 

I don't know how much I can stress this to anyone reading these posts but the sinlge most important lesson I learned in the last five years is that anyone going through any kind of serious illness NEEDS A PATIENT ADVOCATE.  If you can provide that support to someone in need, please do so or if you need that kind of help, please ask someone close to you to be that person. 

Mom is sleeping over tonight and she'll spend Valentine's Day with Dad.  She left his room to get a cup of tea for herself after dinner and he said that the nurses came into his room and asked him who put up the Valentine's streamers of hearts and flowers on his window and the little chocolate balloon on his dinner table.  he told them that his wife did it and then he told us that before they were married, she was the one who taught him about Valentine's Day.  He was remembering that she worked at Kawall's and she would come out of the store on Valentine's Day with her card for him.  He said "trust her to remember!"  Makes me think that in 58 years of marriage there is the good, bad and ugly but in the end, what should matter is the good because the bad and ugly can consume you if you let it but if you focus on the good, surely it will make the passing easier to bear. 

I won't be visiting Dad tomorrow because I will be attending a workshop titled LGBTT* INITIATIVE - ALLY TRAINING (Lesbian, Gay, Bisexual, Transgender, Two-Spirit) which basically means that I am attending the workshop to learn to to be an ally for LGBTT people.
That's the update as of today.

Wishing you a Happy Monday.  
sandra