feeling confused scared for my family

milkywaygirl · New User Joined: 17 Jan 2006 Posts: 6

My brother (age 4) was just diagnosed with leukemia. He is a canadian citizen but lives in Cuba with his mother, my fathers ex-wife. he is currently in quarantine in a state hospital in Cuba and although my father would like for him to come to Canada immediately for treatment, the doctors in Cuba are saying that it is unsafe for him to travel for at least 3 months.

I am very worried for my father, my ex-stepmother and my brother. My father is 61, diabetic, chainsmoker and has been battling with alcoholism for close to 20 years now. He has already suffered one heart attack a few years ago (brought on by stress caused by my brother being born and my stepmom suffering from postpartum depression as well as being generally unstable) and his health is really not all that good. Before my brother was diagnosed I was worried enough about my fathers health and was considering organizing an intervention to address his ongoing drinking problem as it has begun to affect his work and his health is deteriorating now with the diabetes. He doesnt take care of himself well at all and I oftentimes find myself lecturing him and telling him to not smoke that 4th cigarette in a row. He just has no control sometimes.

In three months hopefully my brother and ex-stepmother will be able to come to canada for his treatment. I have decided to move home to help out my father and stepmom, but I feel very apprehensive about the whole situation. I am 27 and have suffered from depression on and off since my teens and am very afraid that I may not be able to cope with the situation, but there really is no alternative. My father is a small business owner and works long hours and besides is basically a senior citizen and doesnt have the energy to care for a sick 4 year old as well as his ex (who doesnt drive or speak english). My father also suffers from depression, as well as my stepmom, who was most recently institutionalized for post partum depression following the birth of my brother.

I feel that I have no choice but to move home and help out - there is no way that I could sit idly by and let them sort it out amongst themselves. I just feel that this whole thing is going to turn out very badly what with the emotional instability of my father and stepmom, not to mention my fathers alcoholism and chainsmoking. He is so addicted that I wouldnt put it past him to smoke and drink in front of my sick brother. My stepmom, when she gets worked up, flies into rages and cannot be reasoned with. She is also extremely stubborn and doesnt trust canadian doctors and I foresee a lot of arguements and fits in the future regarding my brothers treatment.

I am just really at a loss right now. I know that moving home and being around these people in their states is going to be hugely detrimental to my own self, but I really have no choice. I feel that I will have to take on the role of caregiver to all three of these people.

All this, and then on top of this I am constantly thinking of my brother and feeling terrible about his illness. I dont know why he had to get leukemia, hes just a normal little kid. I feel so bad when I think about what he is going to have to endure in order to get better. I try to not entertain the idea that he may die at all because I cant deal with that.

I just feel that this is all so unfair - I myself have my own issues to deal with and am trying to go back to school and this whole situation is going to set me back quite a bit. Now not only do I have to worry about my fathers health, but also my brothers and stepmoms, and now I'm going to be seeing and dealing with it 24-7.

Its just really unfair and I dont know what to do really, I feel sad all the time and dont know if its depression or just normal sadness that I am feeling over what will soon be transpiring in my family.

brainman

Hi MWG,

I fail to have words to express how I feel... You must be overwhelmed! Why can’t cancer leave the young alone? Why doesn’t it just attack us “old people”? It is so unfair. Your heart is in the right place. You do need to care for your father. It does not sound like there as anything you can do for your brother.

Although……… I have heard of some medical teams who, voluntarily, will go and extract sick people who need medical care somewhere else. In a sense, you are fortunate to be in Canada. Canada does have an embassy in Cuba, doesn’t it? They might be able to make arrangements for any documents needed to release your bother from the care of his Cuban doctors into the care of this team of doctors. The team, of course, would have to go equipped to handle your bother’s low immunity. I am sorry that I do not know the name of any of these teams. I am sure most are in the US. But the Canadian government could get approval for the team to go to Cuba on this errand of mercy. I would say it’s worth a try! Search the Internet. Contact your nearest State Department's office. Who knows?

I will be praying and thinking about you and your family... especially your little brother.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

brainman

Here are two for you to look at:

www.globeaware.org/
http://www.angelsofflightcanada.com
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

milkywaygirl · New User Joined: 17 Jan 2006 Posts: 6

Hi Brainman-

Thanks so much for the links. I am going to check them out right now. I think I am going to have to take a very active role in this whole process as my father has already started missing work and when we call at home he "just wants to be left alone", when he really should be making calls and asking questions. I am going to go over there after work today to talk to him and give him some company.

Anyway thanks again so much for the links, and please do pray for my family, it is greatly appreciated.

MarkS

What a nightmare!

I really hate to disagree with Jim but I have to in this case. I would strongly advise you not to move in with your father. I'm a recovered alcoholic myself and I've got a lot of years under my belt of trying to help other alcoholics - so I know about alcoholism. I have advised many wives of alcoholics like your father to save themselves and get out of that environment, so there's no way I would advise you to go into it.
Your father is going down and he'll only take you with him. You can't let that happen. It is my opinion, for whatever that's worth to you, that you will remain much more effective and helpful if you live apart. Visit - yes, cook him a meal - by all means, do his laundry - sure, but then go home! To get drawn into that insanity would only destroy you too.

If your mother and brother come to Canada, where will they live? Surely you're not entertaining the idea of them staying with your father? A wife and ex-wife under the same roof! That would be a recipe for disaster, even if your father wasn't an alcoholic.

This may sound heartless, but what your father has become, he's done to himself. He's a grown man and should be able to look after himself and if he can't do that then it's his own fault, not yours.
Your brother, on the other hand, is an innocent child. Your priority should be with him.

I really hope things work out for you somehow.

Take care and God bless,
Mark
_________________
When you change the way you look at things, the things you look at change.

Roberta1

[quote="MarkS"]What a nightmare!

I really hate to disagree with Jim but I have to in this case. [/quote]
Gotta back up my man Jim Wink

...He never said to move in. He gave advice on medical teams that can help move little brother from Cuba to Canada. That said I do agree with Mark. Smile

MWG: If you want to help you have to be in a condition to help. Having suffered from depression yourself you will be setting yourself up for failure if you go in trying to make EVERYTHING OK. You have to accept that you will do whatever you can and that has to be enough. Dealing with cancer in the Best situation is hard, don't try to fix things you have no control over. Your father is Grown and makes his own decisions. He can either see this as a reason to pull himself up or sink even further, but it will be his choice. You should look into support groups for yourself, or find a therapist in the area to help you deal. That's a lot for anyone to carry alone, and you don't have to. There also may be other agencies/support groups that can help your family deal with daily life. Seek out a local cancer society, they should have the networking set up so they can easily refer other agencies that may help. I hope everything goes OK, and they can transport your brother safely. Good Luck and keep us posted!
_________________
Love and Prayers
Berta

milkywaygirl · New User Joined: 17 Jan 2006 Posts: 6

[quote="MarkS"]What a nightmare!

I really hate to disagree with Jim but I have to in this case. I would strongly advise you not to move in with your father. I'm a recovered alcoholic myself and I've got a lot of years under my belt of trying to help other alcoholics - so I know about alcoholism. I have advised many wives of alcoholics like your father to save themselves and get out of that environment, so there's no way I would advise you to go into it.
Your father is going down and he'll only take you with him. You can't let that happen. It is my opinion, for whatever that's worth to you, that you will remain much more effective and helpful if you live apart. Visit - yes, cook him a meal - by all means, do his laundry - sure, but then go home! To get drawn into that insanity would only destroy you too.

If your mother and brother come to Canada, where will they live? Surely you're not entertaining the idea of them staying with your father? A wife and ex-wife under the same roof! That would be a recipe for disaster, even if your father wasn't an alcoholic.

This may sound heartless, but what your father has become, he's done to himself. He's a grown man and should be able to look after himself and if he can't do that then it's his own fault, not yours.
Your brother, on the other hand, is an innocent child. Your priority should be with him.

I really hope things work out for you somehow.

Take care and God bless,
Mark[/quote]

sorry i think you may have misunderstood. my dad currently lives alone, and we are planning to bring his ex-wife (my ex-stepmother) and son (my half brother) to canada and yes they will live with him as there is nowhere else for them to go.

i just cant sit idly by, and although i appreciate all of your advice to maintain my own space, that is just something that i cannot do as i feel that it is too heartless a thing. to leave my father to deal with his ex, his sick son, his own diabetes and his problems is something that i cannot do. i have resolved to get counselling for myself and all of my friends are being superbly supportive of me, but i have to go home to help out and take charge. for the past couple days my father was in such a depression that he wasnt getting out of bed or coming to work (i work for him). i went over there and had to physically remove him from his bed, talked to him, cooked for him, brought him all the research and information that i have been gathering regarding my brothers situation, and now i am so happy to say that he is back at work with a positive attitude and together we are going to make things work.

i have told him in no uncertain terms that i am moving home to help him and my stepmom and brother, and that he has to realize that i am making a lot of sacrifices, and i am just as stressed out as he is. i have told him that if i see him drinking then i will leave him to deal with all of these things by himself. so far yesterday night i know he did have a drink but he did it out of sight and for me for now that is ok. i have also told him that he HAS to go for counselling and deal with his drinking right away. these are my conditions for coming to help him and i think he realizes that he cant do it alone and seems to be taking me seriously.

anyway, i just wanted to also say thank you to brainman, brainman i had never considered the idea of a medical escort and since you suggested it i have been in touch with several companies and as soon as my brother is healthy enough to travel we are going to contract one to bring him here. so thanks so much for that, i hadnt even thought of it.

brainman

Mark and Roberta, thank you both for your perspective on Milkywaygril’s problems. Anyway you look at it, the situation seems overwhelming! I do not disagree with you, Mark. I was looking at it just from the standpoint of providing the best medical care the MWG’s little brother.

Several years ago (mid 90’s), I had an opportunity to go with a medical team to my adopted home country, Brazil. I took a tour of state-of-the-art hospitals while there. Here is a list of basic items I noticed missing that any hospital in North America would have:

. Latex or non-latex gloves (except in surgery)
. Hand washing stations or alternative ways for nurses to sterilize their hands between patients
. Disposable syringes, IV set, instrumentation covers… (this list is long)
. Air filtration systems (not even in the OR!)
. Air conditioners (except in the OR. They had a window unit!)

Well, I think that is enough for you to get my point. Maybe I was projecting some of my experiences in Brazil onto Cuba. However, in most things Brazil is much more advanced than Cuba. I expect that is true about hospitals as well. My point is, I would not want my younger brother be in Cuba (or Brazil) with leukemia. I would do anything possible to get him out.

MWG has some horrific issues to deal with. Mark, you ask the right questions: “Where will they live? Who will care for them? Is it possible for an ex-wife and a current wife to live in the same house? What about the alcoholic father? What do they do with him?”

I have no answers to those questions. I just know that if it were me younger brother I would be searching for some answers.

Mark and Roberta, as you can see, I have strong feelings on this issue Smile

_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

MarkS

I think there may be some misunderstanding here. I understood Milkywaygirl to say that she was considering moving in with her father and stepmother ("I feel that I have no choice but to move home and help out"), and Jim saying that he thought it was a good idea ("You do need to care for your father"). That was the only part of Jim's post that I disagreed with.
Sorry Jim, I didn't mean for it to sound like I was disagreeing with everything you said. I'm with you 100% on everything else.

Some other thoughts:
Sometimes church groups will sponsor a case like this. They may also be able to provide some political influence to get little bro here.
Ronald McDonald House - for accommodation once they are here.
Approach local newspaper, TV station(s). A little PR can go a long way.
_________________
When you change the way you look at things, the things you look at change.

Roberta1

MWG,
You go girl! I was so happy to hear things are starting to look up for your dad. No one knows your family better than you. I guess we all know any part of your situation would be overwhelming, let alone evrything compiled to one. I admire your strength and loyalty to your family. My own father suffers from an addiction and my family and I have been trying to help him for years now, It's a vicious cycle of addiction and depression, and his health is not the best. It's hard as the child to step into that role reversal to try to help your parent and devastating to realize no matter what you do, you can't Make them do anything. So I was writing from personal experience. I glad to hear you are having a better outcome than I did. I wish you and your family the best. You are their angel!
_________________
Love and Prayers
Berta

milkywaygirl · New User Joined: 17 Jan 2006 Posts: 6

[quote="Roberta1"]MWG,
You go girl! I was so happy to hear things are starting to look up for your dad. No one knows your family better than you. I guess we all know any part of your situation would be overwhelming, let alone evrything compiled to one. I admire your strength and loyalty to your family. My own father suffers from an addiction and my family and I have been trying to help him for years now, It's a vicious cycle of addiction and depression, and his health is not the best. It's hard as the child to step into that role reversal to try to help your parent and devastating to realize no matter what you do, you can't Make them do anything. So I was writing from personal experience. I glad to hear you are having a better outcome than I did. I wish you and your family the best. You are their angel![/quote]

Roberta thanks for your good wishes and kind words. I feel in my heart that I am doing the right thing, and I know that God will give me the strength to get through this and help my family. I feel confident that my brother will be ok, and I hope that this experience will open my fathers eyes and maybe bring about a change in him.

I just have to stay positive, if i am positive hopefully it will rub off on them.

I swear, i am only 26 but in the past week and a half i feel i have aged about 10 years! I just hope that my face doesnt age 10 years too! Very Happy

milkywaygirl · New User Joined: 17 Jan 2006 Posts: 6

Well I think my father has decided to leave my brother in cuba as he feels that he is receiving better (?!!) treatment and care there. He says that if he needs a bone marrow transplant or radiation he will bring him here but in the meantime he will stay in cuba.

I can kind of see his logic - the kid nor my stepmom speak english, right now he is in a hospital fulltime receiving 24hr care and my stepmoms family and friends are all helping out and supporting her. If he came here my brother would have to get accustomed to all new nurses and doctors (who dont speak spanish), probably would be an outpatient, and my stepmom wouldnt have her family around her to help out.

He has a point but if it was my kid I would definitely bring him here. I think maybe he has come to this conclusion because if he did bring the kid here he would have to change his life quite a bit and deal with his alcoholism and chainsmoking or risk the kids health and wellbeing.

I cant help but feel angry at my dad for being so selfish - he doesnt want to change himself so he will leave my brother in a third world country and just send money. Granted, the health system in cuba is full of well educated doctors and they are fully equipped medicine wise, but bottom line - its a third world country.

I also feel angry because i have moved home, given up my appt, turned my roomates life upside down because now he has to find a new place, and my father doesnt seem to be changing his ways. I have become the maid, cook and babysitter. I told him he has to deal with his drinking, made an appt for him at the doctors which he refused to go to.

He continues to drink (at least not in front of me) but will drink in his room until 2 or 3am, and yesterday I was awoken to the sound of him falling in his bathroom. I went to check it out and he said he was ok, he was sitting in the bathroom in the dark. i told him to go to sleep and went back to bed. then 5 minutes later i hear him stumbling and falling again, and go back AGAIN to tell this guy to GO TO BED! he just doesnt listen.

I dont know how much I can take of this. I moved home to help him with my brother, not to be his caregiver. I moved out of his home long ago because I couldnt deal with his drinking and always worrying about finding him dead in the bathtub or something like that. Now I am back to that same place and I am ANGRY.

Yesterday when I made him dinner (tofu and vegetables and rice - he is diabetic and I am trying to cook diabetic friendly food) he complained about the tofu and told me that I had better learn to cook more meat dishes. I felt so angry inside - I'M NOT HERE TO CATER TO YOUR EVERY WHIM! IF YOU WANT A COOK AND MAID THEN HIRE ONE!!!

I dont know what to do. My aunt says I can come live with her but she lives about 50km away. I feel that i need to help my dad but he doesnt seem to want to help himself and just wants to continue drinking and smoking. If i leave him again there is no knowing what will happen. Once again today he didnt come to work.

brainman

Then, Mark's original "feel" for the case are right. It is better for you to stay away from your father if he is still drinking. Remember, part of alcoholism is swings of mood and abrupt changes of mind. It is not surprising to hear you say that he has decided not to bring your brother back to Canada. And he is correct on a lot of his reasoning. Sometimes we just think about the quality of the medical care he would receive. However, there are so many more factors. His mother does need the support of a loving family and friends. She has that in Cuba.

My heart goes out to you. It sounds very much like you love your brother.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

MarkS

There's times when I wouldn't mind being wrong at all, and this would have been one of those times.

If I may make one more suggestion? Find an Al-Anon group in your area and just give it a try. It won't stop your father from drinking but it will give you some support and ways to deal with it. You're not alone with this problem and you don't have to handle it alone.
If you can't find a number for Al-Anon, call the number for Alcoholics Anonymous and they will put you in touch.
Please! It will really help you.
_________________
When you change the way you look at things, the things you look at change.

brainman

Another great idea! While Al-Anon will not directly help him, it sure could be a wonderful support group for you during this time.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

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