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?