Caregiver Concerns

Hi,
I am a caregiver for my husband. He is Stage IV diagnosed in 10/04. I also must work for a living. You have written about the world I live in...I tell people I live in a parallel universe now. It is as close to explaining my world to someone else. I too feel overwhelmed and like a juggler with way too many balls in the air and hoping I don't drop one. And I know if I do I am the only one to clean up the mess. My husband's family has done nothing (but cause some problems). And friends have dropped off, actually were never there to begin with. So I have accepted my world and enjoy our moments and take each day at a time and sometimes an hour at a time. A month ago, my mom had a heart attack and my dad is battling bladder cancer, so now I am trying to balance them too. Quite an experience...but glad I am healthy and able to juggle. Could write much more, but email me if you want. Would gladly listen and chat with you. This website has been my therapy. I always read, but don't often have the time to write--guess I am a lurker....I am so grateful for finding this site. It has saved my sanity. Glad you have found it too. Please keep in touch.
Dash

Hello,

What you are going through is not unusual at all.

I am a caregiver of my mother 68 years old. She has alzheimer's type dimentia and lives in nursing home. I am her conservator which means that I make all decisions for her.

She was diagnosed with colon cancer in february of this year. Her hemoglobin and blood count started going low and I insisted on sending her to the hospital. The physician that serves nursing home could not care less. He put her on iron and when it would not change anything he just "washed his hands" of her. In the hospital they ran blood tests, urine test, chest x-rays and did not find anything except urinary tract infection. There was, however, blood in the rectum when a nurse examined her. I had to fight with doctors to have colonoscopy done - they did not want to have it done because she has mental problems. Very "humane", isn't it? They found a cancer and then I had to fight with doctors to not to tell her about cancer diagnosis because that would "mentally kill" her right away. I had to threathen them with court. Then I had to fight to have a surgery scheduled right away again because they thought that maybe it is more "humane" to provide hospice care. And why? CT scan showed that a tumor was in sigmoid part of the colon only. So, good chances of removing it in my mind. But not in theirs... So, I fought and won.

She does not know about her diagnosis. When she went to her surgery I told her that she had a tumor in her colon and it needs to be removed for proper digestion. She accepted that. After the surgery I told her that everything was all right. She asked me "what kind of tumor it was?". I told her that it does not matter because it was removed and now it is all fine. I could never tell her that it was malignant carcinoma in the II stage. It spread to the bladder and they had to resect the bladder and then restructure it. However, the lymph nodes were not affected. Luckily they were able to connect everything and not to do colostomy bag which would have been very hard for her.

We went to see the oncologist for further treatment. He said that it would be a good idea to do chemotherapy in the form of pill rather then injection because of my mother's dementia. I was very concerned about side effects. He said that cancer may come back without it 40-50% if we don't do it and 30-40% if we do it.

This was harder decision about chemotherapy. Harder because the surgery for me was given and the only right way to go. I don't even know what I would do for myself let alone for somebody else...

I decided to try it. The chemotherapy was in the form of oral pill Xeloda. After 1st round (round means 2 weeks) her liver functions were elevated, and she had to stop and wait. CT scan showed a couple millimeters nodules in her liver and lungs which were there before the surgery and appeared to be stable and per oncologist are not concern.

When liver functions normalized, she went on 2nd round and after it liver functions went up again. I was very concerned about her liver. It seemed to me that if this drug would cause liver failure, it is not worth it. They told me that this drug has the side effect of affecting liver. So, I thought about stopping the drug.

And then turned out that she has got severe pneumonia. Per doctor - chemotherapy causes the immune system to fail which caused pneumonia. It was so severe that she almost died from it. She recovered from pneumonia. And there was renal failure also because of low blood pressure at the beginning of pneumonia. It could also be from chemotherapy.

Of course, I now have decided - no more chemotherapy. It is not worth it, it kills cancer cells and at the same time it can kill too.

And of course, all this time I am worried about what is going to happen next. We are going to repeat CT scan in September so to know what is going on.

I might try some alternative methods on her like juicing vegetables and supplements. But it also presents a problem because I have no control over her diet, I live 45 mintutes driving from her and can not deliver meals there every day. If I do juicing for her, she might refuse to drink it because of her mental condition. So, I am in doubt whether I should spend few hundred $ for a juicer, etc.

Her mental condition is worsened a lot since February, she is declining. The nursing home staff told me this week that she is not responding to them when they talk to her (which could mean that she does not recognize them any more, but we are not sure yet) and is not able to complete cognitive tasks like colouring, following movements, etc. She did not seem to recognize me this Thursday which never happended before. She was able to do all that just recently. She might come back or not....

It is very difficult to watch. I am really trying to take 1 day at a time and to distance myself to some extent from this because it will drive me insane and there is nothing I can do anymore that I already am doing. It is out of my hands, it is all in the hands of God....

On the top of this my mother situation, I have been out of the job not by my choice for 1 year now. It has never happened to me before and I am very worried about paying my bills. I live in San Francisco bay area and my mortgage payment is over $2000.

I have a man living with me. He only pays for food and other house supplies. He has been very little supportive of my dealing with my mother's illness, almost none as well absolutely no support for my problem with finding a job. It hurts a lot. The main reason I keep him in my house is because I can not afford financially to get rid of him. He at least pays for something....

As far as friends and church goers are concerned, I am not surprised at all whatsoever at what you have noticed. I am a church goer myself and have noticed long ago that there are a lot of hypocrits there. They only claim that they are Christians but when somebody is in trouble they could not care less. They only want to be with you when all is "rosy". This is not what Jesus came here to teach but this is what many church goers do.

Same is true about so called "friends". I only could call somebody a friend who has been with me through "thick" and "thin", in good times and in bad, etc. Thanks be to God, I have one lady friend like this. Others I don't call my friends, they are just my acquaintances.

So, with all this said, my advice to you is just take 1 day at a time. Take care of yourself because if you are not well, nobody will take care of your husband. Do what you can and do not do what you can not. You are doing everything you can. Leave everything to the Lord, He will not let you down. Practice meditation - it will greatly help you. And if you ever want to talk or a shoulder to cry, please do not hesitate to send me an e-mail.

And please do let us know how your husband is doing.

Best wishes and God Bless.
Eleonora

I wish my mom could talk to right now. She is having a hard time. When my dad got real sick he was sick for 2 1/2 months and my mom desperatly need help and support. Us kids went down every weekend (they lived 2 hours away) but during the week she was hoping friends, other family members, neighbors would be there to help her. She could not go out for 2 1/2 months not to even get a loaf of breath. She felt so trapped. Also my father needed constant care and didnt let her sleep at night. She had to help him in and out of bed and eventually to the bathroom and she is 68. Now that he is gone she is feeling so sad that not many people have called to see how she is doing again I mean friends, neighbors and other relatives besides her kids. So you are not alone in this. I believe some people are afraid to call because they are afraid of cancer. They dont no what to say to the patient or the caretaker so they keep their distance which is a sin because the caretaker and the patient need all the support they can get at this point. If you ever need to talk please feel free to email me at this network. Mindy

I think that people like so called "friends", acquaitances, neighbors, etc. do not want to call, visit, inquire, etc. because they do not want to deal with us in the time of trouble. When everything gets "rosy" again, there they are again.... I have no value in such people and if they stay away when I am in trouble, I want them to say away when things get "rosy" again. I want real friends and not in name only. If I had "friends" who did not help me a bit when I did not sleep and could not even get a loaf of bread when I was taking care of somebody, I would not communicate with them after everything was over. I would rather be alone than with false pretenders. I might be seeing things too strictly but that is the way I am. I want the real thing and if I can not get it so be it, I don't want fakes.

There is a saying: "you know who your real friend is when a trouble strikes". That is so true. When everything is fine, it is easy, but when there is a trouble, then it is oh, so difficult, and nobody wants a piece... Think about it.

I am very grateful for my lady friend Christine who helps me in the time of my need. I am very fortunate to have her as my friend. She is the only one I have and that is fine with me. God is on my side always, He is my best friend.

God Bless all caregivers and survivors!

afraidinindy said:

It had to be hard to have a son to care for as well as your husband. I know there are many others out there that have it much more difficult than I. I guess I just need a pity-party sometimes to get rid of the bad thoughts I'm having. It just hurts when you think you have so many friends but then don't see them when you are faced with a difficult time in your life. Oh, well, the Lord is my Friend and I know He's there at all times. I hesitate to ask, but it sounds as though you lost your husband? Was his colorectal with mets? Tell me about his illness if it's similar to mine so I will have an idea of what to expect. Keep up the good work and I'll do my best to do so also. I want no regrets later - I only pray I can do what's best for him and keep him as comfortable as possible. Thanks for your response.

Hiya. Nothing wrong with a pity party now n then, nor is it unusual to be feeling the way you do. You have an enormous burden on your shoulders and I can tell you that in the past 3 years I have been reading messages on this board there is seldom a week goes by when the very concerns you have do not come up. My dear wife Jen was in the very same situation as you and had to cope with all the normal necessities of life as well as looking after me. I called her my "angel" and the title befits all who are carers. On the subject of friends?...mmm? I guess you could look at it from many perspectives. I tended to think in three ways. Firstly, there were those that were not really "close" and preferred to remain "remote" from our situation. Their lives were too complicated to become involved in our lives too closely. Then there were the friends who in my opinion just had a very difficult time trying to deal with the situation of cancer, not because they did not care...but because they had absolutely no idea how to approach or handle the situation. Finally there were those that were a godsend. Extremely strong people who although they could not relate to the way we were feeling(particularly Jen) they had the ability to try to listen and understand her(and my) need for support.
The difficulty I think lies in the way in which each person is able to deal with our disease....and our many changes of emotional state. The emotional state is not really treated by gp's, only the physical, so we seek comfort from others and it takes strong people/friends to be able to understand the way things become complicated in our lives...just the complicated things you already know about.
Don't be too hard on your friends. They simply do not understand...and that is a word I use frequently on this board.
As for your own personal time....I used to stress on Jen that as a carer she "needed" to go out and enjoy herself, even for only a day out with a friend. You too need to ensure that you set aside time to get away from the everyday rigours of this horrid disease. Your health and wellbeing are also of major importance to be able to continue your role.
Treat yourself...you deserve it!
Huggs, Ross and Jen

JustAnne said:

I am right there with you.

1)I do have one really good friend who has been a wonderful support. But many others ask how we're doing if they see me - but only if they see me! In their defense however, when they ask what they can do to help I can never really think of anything to tell them. My husband is stage IV and has been really wiped out by the chemo, but there's not anything they can do to help that! And many of my friends have work and families of their own so I hate to ask for much when I know they are barely making it through the days themselves!

2) Here is where I really, really relate. I do try hard to take some time for myself, but it rarely happens. My husband is basically home all day sitting in front of the TV. He is lonely so when I get home he wants me to talk to him and wait on him. He is really not so bad off that he couldn't take more care of himself, but he likes to be waited on. We have a 13 year old son who also needs attention. He has helped a lot over the summer to entertain his dad (and I teach so I've had more time this summer.) But school will be starting again in a few weeks and we will be right back on that merry go round. Even with the extra time this summer I feel very overwhelmed so I'm not sure how we will make it once school starts with all the work and activites that go along with that.

So, I can't offer any answers - just that you are not alone!

JustAnne,

I sympathize with your plight as well as afraidindy. I have a concern when you say your husband could do more but likes to be waited on. It is very important to his survival to do as much physical activity as possible. The body has a great system for improvement and is helped by the endorphins produced by exercise. Obviously that may be limited exercise but he needs to know that it is important to his survival. After I have chemo and take a nap I still feel very tired lying there and think I am too tired to get up. However when I force myself up and start moving I feel much better. In addition perhaps he could do some of those things like the bill paying instead of some of the tv. It helps when we have some purpose.

Sorry, I know I sound like a meddler but I truly feel he and you will both feel better if he can realize that he needs to be physically and mentally active within limits.

****

afraidinindy: If you want to email me so we can talk I'm at McGuffee@teleclipse.net

JustAnne said:

****, Thank you so much for your concern -- it is one I share. I am beyond frustrated with my husband's unwillingness to help himself. Not only does he get no exercise at all, he eats all the horrible things that he should not be eating when he has cancer, let alone that he has been diagnosed with diabetes as well. I have tried reasoning with him, showing him articles, begging, and finally nagging. I only prepare healthy meals but he manages to go to fast food places and convenience stores when I am not home (even though he barely gets out of the chair when I am home.) I also asked the doctor to talk to him. Nothing seems to get through to him. He hears what he wants to hear.

I do not view your comment as meddling at all, in fact it validates my feelings. I would be very open to suggestions as to how to get a hard-headed man to do some of those things! I am afraid I have become an enabler because I am so tired of trying to get him to help himself.
Anne

Anne, I wish I had a good answer for you. It is hard to motivate someone who doesn't want to be motivated. I think you may have to take the "tough love" approach. After working all day and making sure he has food, etc. you may just need to tell him you are taking time (30 min or whatever) to (rest, nap, read) and he will have to fend for himself during that time. You need to take care of yourself or the stress will affect your resistance as well and having both of you ill will not help. Good Luck, ****