Will caring people change?

What I observe is how people react to illness and their need to help and to contribute in some way to the recouperation of the loved one. My family is no different. My family being my Dad's immediate family (Mom, brother, myself), his siblings and my mothers family. Each comes with a different perspective on how to help and how to cope.

My two aunts, my Dad's sisters, are desperate for progress. There was a confrontation between them and my Mom Tuesday morning. In the conversation, they wanted to know from her what she is doing for Dad. What she is doing for physiotherapy, what she is doing for rehabilitation. The social worker had to come in and interveen for Mom. The doctor had to come in to interveen. Not a pretty site. Thankfully for my Mom her brother and sister were present to protect her. Mom isn't thinking in those terms just yet. She is caring for his day to day needs. The hospital is not in a position to give day much therapy as he is not conscious enough, he is not capable to following instruction. We've gotten him to the point that he is sitting in a wheelchair and wearing regular clothes. This is wonderful to see. My aunts called me asking to meet me the evening of the blow up with me Mom. I met them after viewing a Long Term Care Facility. I meet them at 3:30pm. For the most part it was a pleasant meeting. I got very angry at them for treating my Mother with disrespect and anger. I got angry at them for letting my brother speak to Mom in his rude and disrespectful way. I know what they want. For them to get accupuncture they need Mom's permission. They need Mom. They need me to speak with Mom. Here's what I want in return: respect for Mom. Respect from brother to Mom. Very simple.

They were informed of what brother has done. How he hasn't called her. How he hasn't brought the kids to see her. How he hasn't cared for her. He's lied. He's bent the truth. All the information they have received has been through him. Through the eyes of someone who is angry at the world. Angry at my Mom. There's too much anger. Whatever his issues are he needs to address them and anot direct it toward Mom.

When they met Mom the next morning the to sisters were very civil and pleasant to Mom from what I was told. I have hope that we can work together. I'm even getting email from brother. I keep trying. I'm exhausted.

Accupuncture...

There's grumblings in the backrooms about accupuncture for Dad. The Florida aunt and brother have apparently agreed that accupuncture is the only thing that Dad has any hope of curing him. It seems that Western medicine has given up on Dad. Thay have nothing left for him. This is all hearsay, by the way. Mom is telling me about how they are trying to pressure her into forcing the hospital into letting a accupuncturist in. Mom keeps saying that we need to get premission from the hospital. Brother says we don't need permission. I guess the hospital will let any "doctor" into their building and let them provide what ever service they want. And the hospital is quite happy to look after any issues that may arise after the "doctor" is gone. I think not.

Don't get me wrong. I've been the recipient of accupuncture sessions for many years. I'm a firm believer after the healing I received for my back, knees and shoulder. But accupuncture is a process not a one time cure. When asked who will pay for this, Florida aunt says since Dad won't required long term care, there will be money. She's presuming that Dad is going to get cured through accupuncture. I don't know what the study's have shown on accupuncture and strokes. And specifically with Dad's stroke. This isn't your typical stroke. We're talking about many strokes across many regions of the brain.


I won't go into the details of my visit to Dad today. But brother and his family showed up. He made his daughter sit in the chair opposite Dad. She sat there and started crying. Neither brother or his wife made any attempt to console her. It took Mom and I to comfort her to the point where she stood by the bed and held Dad's hand. Dad always said the brother and wife shouldn't have had children. I can see why.

A fall out of bed and a scene from a bad TV series...

Mom called tonight. The hospital had called her - Dad had fallen out of bed. This makes the third time he's fallen out of bed. I tell her I'm on my way. It's 7:40pm. As I get on my way lots of things pass through my mind. Mom calls again on my cell phone. Don't bother coming, She's at the hospital and Dad's blood pressure is low, she's going to spend the night. I tell her she can't stay, I'm coming anyway.

I arrive at 8:15pm, record time for me, I was seriously speeding. I ask for the charge nurse. What's the plan. How are we going to watch Dad. Mom can't stay all night, she was here all day. The charge nurse ways she's pulling a nurse off of her regular duties and will be assigned to watch Dad. I'm a little hard on her when I arrive, but calm down. During the conversation, brother arrives. He says to Mom that we need to get in an accupuncturist. The aunt from Florida requested the accupuncturist and has found one. Mom says we need to get the approval of the doctor. Brother says we don't. The nurse says it wouldn't be permitted by the hospital. Brother says to the nurse "who are you, you aren't the doctor". Brother continues and says that Western medicine has given up on Dad, that we need to try accupuncture to help him. Now, I'm not opposed to accupuncture. I've been the recipient of many accupuncture session. It's done wonders for my back and knee. Is it appropriate in this case? Not sure. Brother continues to say his words. Mom asks him to take the conversation out of the room. She says Dad can hear and this is not the place for this discussion. Mom asks the nurse if she wants to get security to remove him from the room. Brother says Mom never listens to him, doesn't respect his opinions, doesn't want to hear what he has to say. I say "if you didn't keep telling her to f*!& off maybe she'd listen to him". More conversation, more load voices, more Mom asking to move the conversation. Brother finally leaves. It's exhausting. I thought my brother and were making some progress. He was emailing me and resonding to my email. I expect the emails to halt. What causes him to behave this way? Why is there so much anger? Where did it come from? Telling Mom that if she doesn't act and get the accupuncturist in it will be on her conscious. She will have to live with that decision. Leave brother. Leave and leave the room in peace.

When brother leaves the room is quiet. The energy is calm. Dad has his eyes part open. The nurse pulls Mom aside and asks me to join them. She can see the conflict with the family. She can see the anger in brother. Is he jealous of me? Mom says "yes". I don't know why. I think he's angry at the world for having to live his life short. Brother is 5'4". He's had to deal with that all his life. Mom is 4'11". This is where brother gets his height. I'm sure he's angry at her for his lack of height. He's taking it out on her whenever he can. He's not bringing his kids to see Mom as a way of punishing her. He's forgotten that Mom spent many days looking after them. Free babysitter. Never a thank you for the care. If Dad did hear all this, if Dad could see all of this. He would be offended at how Mom was being treated. He would tell brother to stop it or leave. He wouldn't put up for it.

Christmas, Holidays, Family and Such...

Christmas is here. Dad is in the hospital still. Daughter's wish of having him home didn't come true. I wish I couldv'e brought him home, but I knew the road would be long.

We're still in the process of looking for a long term facility for Dad. Many places only have scheduled tours. Because of the holidays the tours are cancelled. It won't be until next week or the week after that I can visit the one place I think Dad would be best suited for. Mom absolutley refuses the two that we visited. But they are the only ones nearby that have availability. It is difficult seeing Dad in that kind of environment. We are looking at these places as a form of rehabilitation and care, with the intention of bringing him home. The patience there are waiting. This is their home. Mom doesn't want Dad there because she wants him home.

Mom didn't want to celebrate Christmas. It's too hard for her. She didn't want to come with me for Christmas, but at least I made her go see her Mother and sister for Christmas dinner. Many tears Christmas day. She's having it tough.

Brother is having a few family over for dinner tonight. Family from out of town. He didn't invite Mom. He didn't bring the grandkids over to see her. I don't think he realizes what they can do for her, lift her spirits. Or perhaps he does and that's why he's not bringing them over.

Merry Christmas.

Dad got moved out of Acute Care...

Since Dad is no longer considered Actue Care, they've moved him down to the 3rd floor. Pace is less hectic for the nurses.

Brother initially said he wanted to be in charge of finding long term care for Mom. He wanted Mom to sign over medical Power of Attorny. Mom has had enough of Brother and told him to look after it all. Big mistake. I blew a gasket. Brother told Mom he wasn't going to call me. He would give her information and then she would pass it on to me. I said for decisions like this I want to be involved directly. Mom's in a difficult place since Brother and I don't see or talk to each other. She had a melt down and hung up the phone.

She called later to say she told Brother I would be looking after it. Not really my intention. I just want to have communication. I knew he would be leaving me out. And leaving Mom out as well. I explained that I didn't want to take this away form Brother. It was important to him. We all need to contribute, in some way. This was his. I told Mom I wanted him to look after the research and arrangements as long as he could communicate with me. Email would be fine. He wouldn't even have to talk to me. She called him and told him. I emailed him and told him. I told him we needed him (people will say anything at times to make it all smooth). He called Mom an said no. He emailed me back (surprisingly) and said no. Mom doesn't want anything to do with him anymore.

I'll work with Mom to get the 3 places the Hospital needs to apply for Long Term Care.

Great day for Dad...

Daughter and I woke up early to take Mom to church. After we has breakfast at the nearby greasy spoon. Back at Mom's house I shovelled the car out from under all the snow. I was concerned that the car was sitting for too long and it wouldn't be able to start. After an hour of shovelling I was able to start the car. I took it out for a bit and then filled it with gas. I didn't want ice to develop in the mearly empty tank.

We went to the hospital and found brother in Dad's room. He promptly left without saying anything to me. He spoke briefly to Mom and then said bye to her.

Dad was having a great day. Daughter spoke to him. He nodded to her questions. He even spoke a few words. "Yes", "ya" and "I'm warm" were the highlights. It looks like he's even trying to sit up. He's still strong. I know he's going to recover some what. To what degree is the big question now.

Daughter was so happy to see Dad make some progress. And so am I.

Long term care...

We have the family meeting. Same room as before. What we know...
He can't feed himself. He can't sit up. He's not awake and aware enough. He's not in a position for rehab. He needs a feeding tube. He can't communicate.

Acute care will be moving him to another floor while he waits to go to a long term care facility. There is a lengthy process to get a bed for him in a facility that will be suitable. It needs to match Dad's needs as well as Mom's needs. Convenient visitation is important. We get an over view of the process and timelines.

Dad looks quite good today. His eyes are bright, he can nod or shake his head in response to questions.

Family meeting - long term care...

The hospital wants to have a family meeting to discuss Dad's long term care options. I know there isn't much left for the acute care ward to do with him. What can we do for Dad now?

Another stroke?

Mom called Tuesday at 10:30am. She spent the night at the hospital in Dad's room. Why? On Monday when she was visiting, she noticed that his left hand was trembling. She asked the nurse if he was having another stroke. The nurse thought maybe he was. Mom was afraid to leave him. She said he looked so bad. She was afraid that he was going to pass away. I think she stayed because if he did pass away she wanted to be there with him. She didn't want him to die all alone.

I called the floor manager. I didn't want Mom staying again. I asked the manager for some suggestions. Mom can't keep staying all night repeatedly. She'll get ill. She's already lost too much weight. The manager said that staying overnight is not a necessity for Dad's situation. The hospital can in fact, ask Mom to leave. She's not going to like that. Not one bit.
I was so upset that she spent the night. And she was going to do it again. I didn't drive in to work. So I told my manager that I'd have to leave. I left work, took the train home. Hopped in the car and drove back into the city. I arrived at the hospital at 4:00pm. Mom thinks I came from work. I tried reasoning with her. I didn't want her to stay again. All night.

Mom was in the room just looking at Dad. I tried to understand what she was going through. Why she wanted to stay. What she thought she could accomplish by staying. She just didn't want him to die. Not then. Not that way. I understand. I'm trying to understand.

I did manage to get Mom out of the hospital. My aunt and Mom's friend showed up. They all chatted for a while and then we all left to go to a restaurant for a bite to eat. I treated all of us to a nice meal.

I left to go back home. It was an exhausting day.

On the move again...

We had a huge snow storm yesterday. My day started ad 5:30am to travel into work. I need to drive in when I go to the hospital so I can take Mom home from the hospital. I called Mom at 8:30am from work to let her know I drove in so she knows I'll pick her up at the hospital. No answer, she's probably out shovelling snow.

Mom calls during the day to let me know they are transferring Dad back to Scarborough Grace Hospital. She doesn't know when. This hospital has nothing left for Dad. They've exhausted all tests.

I left work at 4:00pm to go to the hospital. Still no word on when. The nurse preparing Dad for the trip so we get a bite to eat to get out of her way.

We find out at 6:00pm that the amulance will come at 7:00pm. It doesn't show until 8:00pm. I follow the ambulance to Scarborough Grace. It deoesn't take them long to get Dad in his new room. He has a window bed again. Nice. Mom's all frantic about the move. Mom doesn't like change. We need to wait for the doctor to check him out. There are no bumper pads to protect his head. There are restraints already on the bed (must have been left from the last patient). There is obviously no sitter to watch Dad. Mom hovers over Dad thinking that at any moment he is going to fall out of bed. She lurches at any movement. It's difficult to be around when she's like this. Dad moves because. Just because. I don't ask why. He just does. Mom won't leave. She's going to stay all night since there is no one there to look after them. I ask the nurse "what can we do to assure my Mom that Dad won't fall out of bed so she can go home and sleep". The nurse says "she can stay if she'd like, not a problem". I say "I don't want her to stay all night, she needs to get home and get some sleep". I get the "we're already short staffed", "we can't watch him all night", "we didn't know he was coming so no sitter was arranged", "maybe a family member can help out", "I'll make a call to the Manager On Call". I was trying to remain calm through all this. I was exhausted and my patience was very thin.

Miracle. The hospital got a sitter for the evening starting at 11:00pm. The nurse asked us to stay until then. The doctor finally came to assess. "Why is he here?", "Did he do his procedure at Sunnybrook", "Can he speak", "Can he eat". I know they have a huge binder on him now, it's red. Does anyone really read it? If the charge nurse would have read it, even skimmed it, they'd get an idea of his situation. But I guess it's better for them to ask us. The only people that seem to have an idea of the big picture is the family.

We finally leave the hospital at 11:00pm when the sitter arrives. I get home just after mignight. I'm exhausted. I have a bowl of soup. Michael waited up for me. He hates when I drive late at night. We go to bed. I fall asleep within minutes.

Allow the good things to shine...

Sometimes it's difficult to celebrate the small things. In the hospital there are challenges all around you, all the time. Patients with challenges. Challenges can range from asking for a Coke, to going to the washroom. Dad has his own set of challenges. Being alert. Responding. Eating. But little things happen and we need to acknowledge these small events and celebrate them.

After many weeks Dad seems to be more alert tonight. His eyes were open. He was trying to turn over. He could answer questions. He formed a few words. I use the word "formed" because he wasn't speaking with voice, but I could see him form the words "yes", "no" and "hi".

Dad was having a good day.

Another family meeting...

The doctor's asked for a family meeting yesterday. Atleast they were able to say 4:00pm. It all hinges on the availability of the neurologist.

Here's where human interaction gets very interesting...

Brother wanted the meeting on Thursday. He said that the co-ordinating intern and another doctor are being uncooperative because they won't hold the meeting on Thursday. Brother can't make a Tuesday or Wednesday meeting (school, children, etc.). He told Mom he would file a complaint against them for being uncooperative for not accomodating his schedule. He also accused Mom of preventing family from coming to the meeting. He wanted Dad's sisters present. It doesn't matter to Mom if the sisters are there or not. She never said she didn't want them there. She told Brother to ask them if he wanted. After some kind of heated exchange between Brother and Aunt, Brother hung up on Aunt - don't ask me why, I don't know.

Short story - we're ALL going to be there today for a 4:00pm meeting.

Stages of grief...

Mom has increasingly been a little difficult to be around. At times she's very pleasant and then the next her words are very biting. What are the stages of grief. Dad's not on his death bed, but that doesn't mean Mom's hasn't undergone tremendous loss:

http://www.cancersurvivors.org/Coping/end%20term/stages.htm

The stages Kubler-Ross identified are:

• Denial (this isn't happening to me!)
  
• Anger (why is this happening to me?)
  
• Bargaining (I promise I'll be a better person if...)
  
• Depression (I don't care anymore)
  
• Acceptance (I'm ready for whatever comes)

I'm no psychiatrist. I do know that it must be a horrific situation to be in for Mom. Your partner of 45 years is now gone. If Dad had passed away, Atleast Mom could go on with her life. Right now everything is in limbo. And may be for some time.

How do I help Mom? I can't make Dad get better. I can't change things. I can't get him home. I just couldn't take being around Mom too much. There's a level of anger that lashes out from time to time. Today it was at me. I tried to take it but it hurt too much. She can't see the trees through the forest right now. There are many people around who want to help. But she sees them as a hinderence. I know she didn't mean it. It's hard to be around her sometimes. I love and support her. These are difficult times.

Long term care...

Does Dad have long term disability insurance? I don't know. How do we care for him. Mom can't care for him at home. I started looking into LTC. In Ontario, Canada the government pays for the medical needs of the patient, but the family must pay for the accomodation at the facilities. If the family can't then some of it may be paid for by the government. How do we care for Dad without leaving Mom destitute? Some places have 4-7 years waiting list. We need something in place soon as I don't know when the hospital will release him.

Change in title...

The original title was:

My Dad Had A Stroke (but the Doctors don't know)...

I've changed it now since they definately said it was a series of strokes. Atleast they know something.

Another cancelled test...

Hospital asked Mom to be there by 7:00am to sign the forms etc.
After all was done, Mom waited. Only to find out by 10:00am that the test had been cancelled. The team to do the test was not prepared for Dad.

Thanks for getting my Mom there for nothing guys. Can't you see from her eyes how draining and tiring this is for her? Can't you see how her heart is breaking? Can't you see that she won't give up on Dad? Can't you see?

Another family meeting...

Mom went to the hospital and the doctors want another family meeting.

It seems that the aneurism fix and the brain biopsy are too risky for the hospitals to consider.
But they still want to do the T.E.E. test.
So what's the point of the T.E.E. test if there is not going to be any fix for it?

They will schedule it for Thursday December 1, 2005.

Brother was at the family meeting. I wasn't able to attend. I was already at work and hip deep into it with commitments so I can't leave. Mom asked brother to summarize the meeting and send it to her by email so she can send it to me.

I won't hold my breath for the summary.

Manna from heaven...

I guess after not eating any kind of nourishment for over a week, the liquid sustenance that the hospital is now giving Dad through the PEG is like manna from heaven. He's been "eating" for over 24 hours now. Dad still looks like he's trying to get over the sedatives given him on Thursday for the tests. Mom's happy that he's getting some "food".

I took Mom to get a cell phone. It's a basic pay as you go plan. It's for emergencies for when she might be travelling late at night. I programmed a bunch of numbers in it for her. Now if she only can figure out how to answer and place calls.

:)

The PEG...

It was inserted yesterday. They will be giving him liquid food today. I don't expect any issues from having it put in.

Meeting with the doctors...

They need some direction. We've got some choices to make. It depends on what we'd like for Dad.

The MRI was successfull yesterday. It provided the much needed clarity into his state. Dad definitely had multiple strokes. Over a period of days most likely. But what was the cause. The doctors still need to find this.

There are 2 basic thoughts on this:
1. The trans thoracic echo test from yesterday showed a possible aneurysm. This may be the source of the blood clot causing the stroke.
2. Vasculitis of the brain. This is infalmmation of the blood vessels causing restriction of blood to the brain.

A third suggestion was demylenization. However, Dad was given steriods early on and this would have cleared this up.

So what we have is to run a T.E.E test. This will show whether the Dad has an aneurysm or not. If it is detected, the doctors want to close it in case more clots may develop and product another stroke.

The hospital will conduct further MRI's after the aneurysm surgery and see if he still is exhibiting effects. If not, then that likely was the cause of the clots.

The higher risk if the effects are still showing is to have a brain biopsy done. They would drill a hole in the skull and remove a sample of brain tissue. This is the only was to determine if he has vasculitis of the brain.

This is where we are right now. One day at a time. Mom's holding up. Barely. I call her during the day at the hospital and in the evening after she gets home.

Daughter added on thing to her Christmas wish list: Grandpa to come home.
I wish it could be possible, but I don't think it's going to happen.

Brother wasn't able to be present at the meeting. I'm sure Mom will get an earfull for letting the meeting go on without him. Bless his heart. He means well. He did say last night that she's not thinking of Dad and that she needs to consider Dad's health. Thanks, but what do you think she's been doing all along? I don't think she's enjoying the situation for the extra attention it gives her. I try my best to counter the negative comments that brother gives her. She knows what's best for Dad. That's all we're all thinking of... what's best for Dad.

Mom will give her consent on Monday for the T.E.E. test after informing Brother of the information given us today. I told her to hold off until Brother was informed. I'm sure he'd go ballistic if she signed off on the prcedure without telling him.

Meeting?

Mom left a message on my cell phone voicemail. Seems brother was all rude to her so she said to let him deal with this one and not to bother going to the hospital. I drove in today specifically to go to the hospital. The meeting was about going over the results of the tests. I'd like to be there for the diagnosis.

Screw it, I'm going anyway.

Numerous tests today...

Dad had a battery of tests and procedures, relatively speaking when compared to the last 5 weeks.
1. Trans thoracic echogram
2. MRI
3. PEG

They were going to do a TEE but decided to do the trans thoracic instead. Good that they got the PEG done. Dad can get food again. IT's been over a week on only saline and sugar. Well done was the MRI - finally.

The hospital called and wanted to discuss the results. They left a message on Mom's answering machine requesting to meet tomorrow morning. They also wanted to talk about the brain biopsy as the last test. Once all tests are completed then Dad goes back to the first hospital. They definately believe he had multiple strokes due to the numerous infarcts seen on the CAT scan.

Brother got all in a huff about the meeting as he wouldn't be able to make it. Mom said told him to call the hospital as he wanted them to have the meeting next Tuesday. I thinh they want the bed back for other patients once Dad is done there.

Challenges of MRI

The hospital tried to get an MRI today. It wasn't successful. Dad is moving too much. The nurses and doctors call it "restless". They sedate him because his movements can and did get him out of bed and fallen on the floor twice now. They gave him something a few hours before the test, but it never works out for Dad that way. He resists the sleepiness. He fights it. Hours after it's suppose to knock him out does he finally succumb. He's so stubborn. That's where I get it from.

I'll get Mom a cell phone this weekend. She needs it for winter time. And for us to call her to make sure she's okay.

Intensive Care in our health care system...

This article relates to the state of health care in Ontario (www.thestar.com: The right patient in the right bed). Dad's getting bed sores. It happenned in week 3. How much of his moving about is related to this issue? He moves to alleviate the pain, but by moving causes more openings in the bed sores.

I fell dead asleep last night. If there was an earthquake I wouldn't have felt it. It must be fun to be around me.

As theories go...

Dad has an irregular heartbeat. This caused at some point a clot that
caused a bilateral infarc of the thalmus. Is this new to us? No. This
was suspected early on. However, there is no proof whether this is
actually the case. Would this have made a difference 4 weeks ago when
Dad went into the first hospital? I can't answer that question. After
4 weeks of waiting, have we missed the opportunity for full
rehabilitation. Or does it matter with this kind of stroke? The
general impression I get is that it would have made no difference. The
neurologist at the last hospital said this would be the worst case for
recovery. He didn't hold out much hope. In fact he mentioned that
there was only one other case similar to this and after a year the
patient entered the hospital system, the patient died.

Recap: The hospital wants to put in a PEG for feeding as Dad keeps
pulling out the NG tube. When the neuro team came in to look at Dad
the doctor took a kleenex and put it up and around Dad's nose. He
tried to swat the kleenex away. It bothered him alot. This would
explain why he keeps pulling out the NG tube. It bothers him. It would
bother me too. But because he keeps pulling it out he isn't getting
any food. They'll insert it one more time. Mom's concerned about
putting in the PEG because it's surgery. After researching the PEG
insertion process, it doesn't seem to be a problem. However, Dad took
such a long time to come out of the heavy sedation when he went for
the CAT scan. Brother doesn't want Dad to have any surgery. Mom
doesn't know what to do. I'll support her no matter what.

Dad's had a sitter for the past few days to watch him. This gives Mom
a much needed break. Daughter and I joined her for Church and
then went to the hospital to see Dad. We stayed for an hour then left.
I helped Mom do some Fall work for the house as she doesn't know what
to do with some things. So today I spent half with Mom and the other
with my own family. Not satisfying for either side.

I don't expect Dad to be home for Christmas. I told Mom she will come
to our house for Christmas. She started tearing up. She can only think
about one day at a time.

PEG...

Since Dad keeps pulling the feeding tube out of his nose (I'd likely do the same given I don't think I'd like something permanently up there). The hospital wants to put in a PEG surgically. It would solve the issue of him pulling it out (counting 6 times now) and provide a convenient method to be able to nourish him. We're a little concerned about the surgery and anesthesia. Dad took a long time to come out of the last heavy sedatives given him for the CAT scan test.

Dad got transferred today...

I wasn't expecting it to happen so soon. I was expecting the long wait for a bed. Mom called at 3:00pm and told me the ambulance had arrived. No warning. Mom had taken down some of the personal items like cards the grandkids made yesterday already. I wasn't able to help out as I had daughter tonight and Michael wasn't home. I don't know how she'll get home. Another taxi. I'm concerned about the financials of the household. Mom's going through lots of money due to the additional expenses.

I worry about both of them.

Moving Dad to another Hospital...

We did receive word that Dad will get transferred to another hospital. Sunnybrook has a neurology department. Main Doctor would like to transfer him there because they have better facilities to be able to diagnose the issue. The hospital has run out of tests. They have no diagnosis. My Dad lies in bed for 3 1/2 weeks and is the hospital trying to wash their hands of the problem by shipping him off somewhere else?

Problem is that Dad will have to wait for an available bed. How long will that take? If it's lengthy, what happens to him until then? Will they ship him out of acute care?

Doctor's visit...

I dropped in on Dad before going to work this morning. His sitter was there in the room watching him. No bruising that I could see, however that usually shows up a few days later. While I was there, and this is at 7:00am, the reumatoid specialist comes in. Mom's met him before but I haven't. He asks if I'm his son to which I reply yes. He then asks if Dad's any better than last week. I reply "no, he's basically the same from when he arrived". The doctor says he'd like to speak with the neurologist and perhaps give Dad some medication. I reply to the doctor that if he wants to give Dad some medication then it indicates that they must have some idea of what's the cause. The doctor didn't want to say without consulting the neurologist. He did mention that he wanted to up the dosage of Prednisone. This usually has grave side effects:

"Patients with true GACNS, proven by biopsy, invariably require aggressive therapy with drugs such as high doses of glucocorticoids (a cortisone-like drug such as Prednisone) and a second drug known as cyclophosphamide. These drugs are generally administered for six to twelve months and require meticulous follow-up to assess benefit and avoid side effects.

Possible side effects of high doses of glucocorticoids include abnormalities of blood sugar, blood pressure, weight gain, thinning of the bones, and increased risk of infections.

Cyclosphosphamide also has formidable toxicities including lowering of the white blood cells making individuals more prone to infections, bleeding from the bladder and even bladder cancer. Patients who take cyclophosphamide for more prolonged periods of time have a higher incidence of certain forms of cancer later in life."

This is not to be taken lightly. Dad will either start recovery due to these high dosages or die due to the high dosages.

When the doctor comes to see the patient at 7:00am in the morning, does the doctor really expect a family member to be there?

How do you balance work, family and health crisis...

I've never done this before. I don't have the manual. What's the
procedure. Men like steps - Do 1, then 2, then 2a if necessary. Due to
my daughter, I need to pick her up after work and take her home. FYI,
I'm divorced and have shared joint custody of our only child. So on
days like this I can't go to the hospital. I take the train in to work
so I have no car. I want to go there. I want to help in some way. But
today my options are limited.

The bigger question for me is how do I make this all work some how together?

Dad fell out of bed

The hospital called Mom tonight. Dad had some how gotten under the bed of his hospital room mate. This means that he fell out of bed and rolled or crawled 3 feet. One of the neurologists came to make sure he didn't suffer any injuries (but he didn't check if he broke anything). Dad can't eat on his own or move at will. He does pull him self from side to side of his bed and can move his legs. The ward manager and Dad's primary doctor were paged (Doctor never answered - 4 pages too). Mom went to the hospital, mostly for peace of mind, to make sure Dad was okay. My aunt and uncle were there as well (co-incidentally). After they made sure he was okay Mom went home. My aunt and uncle (Dad's side) left before Mom and didn't even offer to take Mom home. Mom doesn't drive. She took a cab to the hospital and back. Thanks aunt and uncle you're so considerate.

Hospital care and nurses...

Last night the hospital called and asked if my Mom or a family member would come and watch my father. They had a sitter for a few nights (11:00pm - 8:00am) to watch him in case he pulled his feeding tube out. Problem was that the nights the sitter showed up he didn't even have the feeding tube in.

Who's responsibility is it for patient care. Having someone, like a family member, watch him all night will ensure that the nurses don't have to put in the feeding tube again if he pulls it out. I know - it's getting to be a hassle for them as he's pulled it out the last 7 times they've inserted it. The nurses are getting frustrated. So is my Mom. She's been there every day since the beginning. The doctors are getting frustrated because they have no answers for my Mom.

Mom doesn't want to complain about the nurses for fear they will end up taking it out on my Dad. Piss on that. If the nurses aren't doing their job then the manager should now about it. Why are they asking family to come in when it should be there job. Why are they sedating him so regularly just because he keeps pulling his tubes out. He's not even aware he's doing it.

Sunday morning...

I slept in until 8:30am. I haven't done this for weeks. I'm exhausted.
I thought lastnight I would take Mom to church (or rather meet her at
church since her sister will actually take her).

I didn't wake up. Hope she doesn't think badly of me. I need a day
off. My back is hurting today.

Parents in need...

Someone mentioned to me that I'm now one of the generation that looks after the parents as well as looking after my own family. I don't think I'm there yet but it gives me food for thought. How will I handle the needs of my parents in a dependence situation and balance the needs of my own family? It's the sandwich effect.

Mom was leaving the hospital just as I was going. The main Doctor showed up and spoke with Mom. They don't have a clue what is the issue. The doctor wants to push to get him to another hospital. It's become clear that this present hospital can do no more for him.

I need to stay at home tomorrow. I can't keep up driving back and forth like this. It's excrutiating. My back is starting to suffer for it. I feel guilty though for not visiting.

Realistic or negative thoughts...

I spent much of the evening in Michaels arms. Crying and at times sobbing. Michael is my partner. My life partner. He has been with me through this. Even though he hasn't been to the hospital he knows the pain that it has brought our family. Not just my family, but our family. Daughter hangs on to a big teddy bear that Dad gave her years ago.

For the first time I permitted myself to think what was not permitted. That Dad will die before they forgure out what's going on. I'd like to think he's fighting to live, but if I was in his position would I want to continue living? As time goes on I start to think about quality of life. I think about how Dad would like to live. I think about Mom and her life.

He might not come home...

For the first time I had to admit to myself that my Dad might not come home. I don't mean just for Christmas, but forever. I never wanted to entertain those possibilities, but now I have to. I took the day off work and spent it with Mom at the hospital. From the physiotherapist and the hospital Chaplin: he's had every possible test, seen Doctor's from other hospitals, one of the rare and unusual cases in the past year. He's more in a fetal position now. Not stretched out like days before. What can I do? Pray that the Doctor's will find the cause? Pray for a miracle. Pray.

3 weeks in the hospital. 3 weeks in acute care. We'll never be the same again.

-

Fever and bladder infection...

Dad was removed from the feeding tube. He's got a bladder infection which they're treating with antibiotics. He was coughing a wet cough. This is when he could get in real trouble for complications - like the flu.

Diagnosis...

Well, no final answer. It's still a mystery. The Doctor told Mom it could be serveral things:
1. Vasculitis in the brain
2. Demylenization
3. A series of mini strokes (TIA)

Thanks for narrowing it down for us.

Dad comes out of sedation...

Mom stays with Dad most of the days and goes home at night. She was very concerned about his sleeping. He's been sleeping for days. Not opening his eyes. I wasn't going to go today. I need a rest. The driving is difficult. I drive 1 hour in to Toronto and then 1 hour back. Typically I leave the house at 6:00am, go to the hospital before work. After working all day I leave at 4:00pm and go to the hospital. I take Mom home and have dinner with her. I leave for home at 7:30pm and arrive by 8:30pm. It makes for a long day. I needed Saturday to regroup.

Mom calls and says I need to get to the hospital. She left a voicemail.

I call her at the hospital. Dad is starting to come out of the sedation. He's pulled out his IV. She's freaking out. She tells me that if I'm not at the hospital I'm no use to her. It hurts. I try and be there for her as much as I can but I'm getting exhausted too. I tell her I'm leaving and I'll be there within an hour. She calls back 15 minutes later and says not to bother coming. The nurses have put everything back in. I'm upset at the whole thing. I want to help Mom so she can help Dad. She panics and everything is wrong. No one can help. I go back home. Daughter and I will take Mom to Church tomorrow morning.

Heavy sedation...

The doctors need a CAT scan done. If would be better to get an MRI, but since Dad moves too much the MRI is not possible.

It would be three days before Dad comes out of the sedation.

The silence is deafening...

They've got restraints on him and these hand coverings that look like boxing gloves so he doesn't pull out the feeding tube. He's had several cans of it. He keeps trying to turn himself over. It look like he's trying to keep himself physically stronger by pulling himself over. That could just be me interpreting.

Feeding tube...

Dad was put on a feeding tube. He has only been getting saline since he was admitted. He's lost weight. He can't even take ice chips. They're afraid he'll asphixiate if they try and give him solid/pureed food.

He's hooked up and is getting Glucerna, a liquid food for diabetics.

Dad's already pulled out the feeding tube twice. His glucose level varies quit a bit now since he is on the Glucerna. The nurses manage it with more insulin.

Family meeting with the hospital...

We had a family meeting with the hospital. Mom let me know it wasn't just about Dad's health. Brother has taken it upon himself to be rude, aggressive, insulting and problematic for the nursing staff. I guess he, like the rest of us, is getting frustrated with the lack of information and the frequent use of sedatives. The hospital wanted everyone to know that information legally can only be disseminated to the power of attorney - Mom. Brother is not very happy at the meeting as much of the conversation was being addressed to his behavior.

He claims that Mom is unable to provide or pass on the information that the various doctors are telling her. He says she doesn't know or can't remember when he questions her. She asks him if he ever calls her to ask. He says yes, every day. Mom disagrees with that statement. Brother never calls Mom. Not even to find out how she is doing and if she needs food. Or comfort. Or a hug.

A new doctor took over the case from the admitting doctor. She let us know what she is doing. We leave comforted in knowing the doctor has a plan and the hosptial wants to help him recover. Brother disappears after the meeting not saying goodbye to anyone.

What's happenning...

Still nothing. Infrequent visits from the doctors. No information. No ideas. What so we do now? I know Dad will be home. But in the back of my mind I brace for the possibility that this may be long term.

A few days and nothing...

After a few days it's obvious that no ones what the problem is. Dad's gone for a few tests. Problem is that he moves almost constantly. That means they were unsuccessful in getting an MRI. And unsuccessful at getting a CAT scan. They did full blood work and urine. They even did a spinal tap.

The neurologist is suggesting a series of mini strokes or TIA. But this usually lasts less than 24 hours. Perhaps a deep seated central stroke. Perhaps still some kind of infection.

Because he now can't feed himself and he has trouble swallowing, they've put him on permanent IV with no food. He controls his glucose level for diabetes by getting insulin as he can't take his oral medication.

Mom told brother that Dad's not eating. Brother says to Mom that "maybe Dad's lost his will to live". Nice. Real nice.

Admitted to the hospital...

We left lastnight feeling that Dad would be better in the hospital and that he would be geeting the help he needed.

A call at 5:00am this morning showed we were wrong. Dad through the night managed to get himself out of bed. Several times. They gave him a "relaxant" or what is also called a sedative. It was the hope of the night nurse that he would not get out of bed. She hoped that he would be knocked out. But Dad is extremely stubborn. He got out of bed, walked partly down the hall and fell.

When we arrived he was by the emerg station and not in his room. He had a bruise on his cheek and leg from the fall. His cheek was a bit swollen.

They put a catheder in as he can no longer make it to the bathroom and he is having problems using the bottle.

Mom and I waited until they got him to his room. It was in the acute care ward, 4D. Some relief as he now was in the care of professional. They would know what to do. They have the resources to find out what the problem was. Stroke continues to be the word of the day.

Dad had a few visitors. His sisters came. Everyone kept saying that the hospital would now what to do. He would be out soon.

We assisted Dad in eating as he wasn't able to eat by himself. We gave him water through a straw. We did this morning, noon and night. Food is brought three times a day.

Where are the doctors?

Helping Mom...

Woke up this morning. Tired. Not my comfy bed. Fed Dad some soup and sandwich. Opened up my laptop and started doing some work. I took a few days off, but really I'll try and complete outstanding items as necessary. Dad doesn't seem to remember many things. His last few jobs. Where he lives. What his birthday is.

Mom calls me to see Dad. She tells me to call 911. She said "Dad says he doesn't feel well.".
I call 911. Fire department arrive. Then ambulance attendenants. We go to the emerg at the hospital. It's 9:00am.

Dad is put in room #4. Well bed #4, there aren't really any rooms. We give Dad water. He pees using a bottle. He can't make it to the bathroom without assistance. He sleeps mostly. He doesn't know how many children he has. The doctor finally arrives. He'll requisition blood work and CAT scan. We wait. It's 1:00pm.

We wait. It's 4:00pm. Dad's sister and her husband arrive. They leave.

We wait. It's 8:00pm

Doctor of internal medicine arrives. He wants to admint Dad. Finally. It's 9:00pm.

We leave, exhausted.

Seeing Dad with my own eyes...

I arrived in the morning at my parents home. Dad was sleeping. Mom was frantic. She doesn't handle stressful situations very well.
Dad wasn't eating on his own. He needed help. We kept force feeding him every few hours. I'm trying to get all the facts from the last few days as Mom didn't tell me what was going on.
We took Dad's glucose in the morning. It took several tries, but we did it.
Mom's a mess. Dad is not himself. I'm taking the next 3 days off work. I'll sleep over and help look after Dad.

Brother didn't like me confronting him about how he spoke to Mom. He had is 4 year old son with him. He told me to fuck off. I asked him if that was acceptable to speak that way infront of his son. He told me to stop being such an ass. A big ass. Oh - and if he comes over to the house and sees my car in the driveway, he's going to turn around and go back home.

One other thing. He left with his son. Slammed the door. I heard a thud outside. I knew what he did. After he I went outside. He had left a lovely dent in my car on the passenger front side. This isn't the first time he's done something like this. He was driving with his daughter in the back, she was sleeping. A driver honked his horn at my brother. He got out of his car and pounded the hood of the other driver leaving a dent. He has the best social skills.

To top things off today - the power went off. It came back off 4 hours later.

Here's what I gathered on this day:
Last night my Brother told my Mom to go fuck herself because it was her fault Dad had become so ill. He felt that it was her responsibility to make sure he ate due to his diabetes.

Looking at my Dad's glucose level chart, it seems that on October 17, 2005 he made 4 entries for his glucose level. That means he tested is glucose level 4 times. Going back in the chart he has one entry for every day. Religously. Except for October 17, 2005.

We don't know what happenned to Dad from when Mom left the house until when Dad showed up at my brothers.

Tuesday October 18, 2005

Dad was still disoriented. Couldn't really get out of bed. Was sleeping most of the time. Mom and my brother's wife took him back to the hospital emergency ward.
After many hours they did the usual blood work and a CAT scan. The CAT scan showed some abnormalities, but the radiologist couldn't confirm what is was. The report said there may have been a slight stroke. The emerg doctor said Dad needed to eat but he didn't have to stay in the hospital. The doctor gave Dad the choice to staying in the hospital or going home. Dad chose to go home. Wouldn't you? Dad went home to the comfort of his own bed.

Mom called me that evening to let me know Dad wasn't feeling well. I said I would be there in the morning.

The phone call...

On the evening of October 18, 2005 my mother had called and left a message to say that my father had been to the hospital and was back at home. She said he wasn't feeling well and that he was resting in bed.

I called her when I got home and got some more details:

On Monday October 17, 2005 he dropped off Mom to my brother's house where she was looking after the grandson. She did this regularly every week day. My Dad also picked up my brother's daughter from the school bus at 3:30pm. Dad was supposed to pick up Mom by 12:30pm. When he didn't show up Mom called him at home but the line was busy. By 1:00pm Mom decided to walk home, it was 20 minutes away. She got home and found that the cordless phone wasn't hung up and Dad wasn't there. She waited wondering where he was.

At 3:30pm, my brother brought Dad home in my brother's car, with a friend of my brothers driving back Dad's car. Dad was disoriented, wasn't sure where he was going or what he was supposed to do. I'm not sure who acompanied my Mom to the hospital emergency ward, but emerg took a look at him and said it may have been due to lack of eating. My Dad has diabetes. They suspected that his blood sugar level had gotten low and that he needed to go home and eat.

The hospital sent him home.

Recounting the last few weeks....

I'll try my best to recount the last few weeks. Some of it is a bit fuzzy given what has transpired. Like many blogs, this is part diary and part therapy.

Some time around October 17, 2005 - My Dad Had A Stroke