Exhaustion, feeling desperate

AnneS

Dear All.

My mother has advanced colon cancer and in a 'last ditch effort' is being treated with Cetuximab. She developed an abdominal fistula end of April. We are originally from Denmark, but are expats in Belgium. There is no family left and I am an only child, and my mother's primary caregiver. I am a veterinary surgeon, but am not working presently as my mother needs me 24/24.

I recently decided to get a second opinion and as a result changed the team (she is now in the best facility we have her, not that the previous one was bad mind you, but just wanted to make sure I had done everything possible). She spent 5 days there, and I insisted on taking her home today. Does anyone else have experience with patients declining markedly whilst in hospital??? I.e. I use around 75% less morphine + other pain relief at home than they do in hospital, and she fares heaps better at home. I hate when she is confused and incoherent. How have others managed these opioid side effects??? Still, the prognosis is very guarded as she is weak.

I just feel so overwhelmed: dealing with drs, nurses, admin, insurances, care, cleaning etc etc.

And the phone ringing from well meaning former colleagues and friends of my mum wanting an update. But they typically catch me in the middle of something, and frankly I just do not have the energy to talk about my mother's disease. Today I started crying when a lady called me again in spite of me having told her just a couple of days ago that I just did not have the energy to talk, but that I would either email her or call her when I did. I felt so disrespected. In addition she repeteadly told me that I had to make sure I took care of myself (yes, we know that as caregivers I think... not always happening though).

I'd like to hear from other caregivers out there. How are you coping? I am trying my best, but feel like a headless chicken most of the time. And at other times, like the worst caregiver ever.

Thanks,

Anne

glasus

hi, I am a caregiver also.
hi, I am a caregiver also. One place you can use is Caringbridge. com, you can update or have someone do it for you. Do it once for all to read makes that part easier. A social worker should be available, or a nurse coordinator? check, ask for help, the money you pay is not just for medical care, but also for ancillary services.Hope the helps my heart and prayers go to you. KEEP YOUR EYES OPEN FOR ANGELS THEY ARE EVERYWHERE!

slickwilly

glasus said:

hi, I am a caregiver also.
hi, I am a caregiver also. One place you can use is Caringbridge. com, you can update or have someone do it for you. Do it once for all to read makes that part easier. A social worker should be available, or a nurse coordinator? check, ask for help, the money you pay is not just for medical care, but also for ancillary services.Hope the helps my heart and prayers go to you. KEEP YOUR EYES OPEN FOR ANGELS THEY ARE EVERYWHERE!

AnneS
Anne. I am sorry about your mother. And I really wish some of these well meaning friends of hers would come and give you a break. There is nothing wrong with asking them for help Anne. As far as the hospital stays and the use of medicine in Europe I should proubly not say much. But I won't let that stop me anyway because your asking and I am an open book. I have some family members in the Netherlands. My step grandmother had many medical problems and it seemed the doctors were more than willing to supply far too much morphine. My parents made six trips from the U.S. to the Netherlands in four months. Each time she was on her death bed and each time it was because they had given her too much morphine. By the next day she was usually up and eating a big breakfast. Too many drugs suppress the need to eat and if you don't eat you don't heal. And our emotional needs are met much more at home or in an environment where we can see pictures or things from our life before cancer. And who really likes to get woke up in the middle of the night so they can check your vital signs or even worse our weight. If your looking for someone to tell you that your doing the right thing then you have found him. If your mother is getting her needed treatments and is not in pain then your doing the right thing. Do as much as you can and ask for help. But don't ever second guess your decisions when this is done. Your a loving and caring daughter with your mothers best interest at heart. You have put your whole life on hold and I know your mother appreciates it. Blessings Slickwilly

AnneS

slickwilly said:

AnneS
Anne. I am sorry about your mother. And I really wish some of these well meaning friends of hers would come and give you a break. There is nothing wrong with asking them for help Anne. As far as the hospital stays and the use of medicine in Europe I should proubly not say much. But I won't let that stop me anyway because your asking and I am an open book. I have some family members in the Netherlands. My step grandmother had many medical problems and it seemed the doctors were more than willing to supply far too much morphine. My parents made six trips from the U.S. to the Netherlands in four months. Each time she was on her death bed and each time it was because they had given her too much morphine. By the next day she was usually up and eating a big breakfast. Too many drugs suppress the need to eat and if you don't eat you don't heal. And our emotional needs are met much more at home or in an environment where we can see pictures or things from our life before cancer. And who really likes to get woke up in the middle of the night so they can check your vital signs or even worse our weight. If your looking for someone to tell you that your doing the right thing then you have found him. If your mother is getting her needed treatments and is not in pain then your doing the right thing. Do as much as you can and ask for help. But don't ever second guess your decisions when this is done. Your a loving and caring daughter with your mothers best interest at heart. You have put your whole life on hold and I know your mother appreciates it. Blessings Slickwilly

Thank you Slickwilly for
Thank you Slickwilly for your lovely lovely post. It made me cry, it was so sweet. The first thing I did went I got home was to replace my mum's Durogesic patch with a weaker one, and cut out the benzodiazpines they are so fond off in hospital. Still, she spent an agitated, restless and confused night as the effects wear off. I just love it when the Drs tell me 'she has to be comfortable'. During a previous hospital stay, she was up every FIFTEEN minutes to go pee as she was so confused and anxious. Sure didn't look very comfortable to me.

I hear you re 'being on her death bed'. Yup. I still have the image of my mum sitting up in bed trying to eat a sandwich but unable to keep her eyes open. The Dr concluded that she 'was giving up', when in fact she was so doped... I checked her out the next day and lo and behold she improved rapidly. This was 1.5 mths ago.

Time is so precious though... and I hate the fact that she has to have her life quality ruined like that.

If I can at all keep her put of hospitals, I will. It really scares me how liberal they are with drugs.

Thanks again for your kind words.

Bless

AnneS

glasus said:

hi, I am a caregiver also.
hi, I am a caregiver also. One place you can use is Caringbridge. com, you can update or have someone do it for you. Do it once for all to read makes that part easier. A social worker should be available, or a nurse coordinator? check, ask for help, the money you pay is not just for medical care, but also for ancillary services.Hope the helps my heart and prayers go to you. KEEP YOUR EYES OPEN FOR ANGELS THEY ARE EVERYWHERE!

Hi Glasus,
I will check that
Hi Glasus,

I will check that out! And indeed see what else is available! THANKS.Just feel so overwhelmed at times. And I forget everything.

Bless you

Anne

slickwilly

AnneS said:

Hi Glasus,
I will check that
Hi Glasus,

I will check that out! And indeed see what else is available! THANKS.Just feel so overwhelmed at times. And I forget everything.

Bless you

Anne

Being comfortable
Hi Anne. I can only relate what I have seen and been through. I had cancer 6 years ago and and life took me down a path of helping others. I am not a doctor and would never claim to know everything about dealing with all the different types of cancer and treatments. Each case is different and everyone has their own issues to deal with. Its always a balancing act with medications when it comes to comfort. My sister recently passed at my mothers home where we kept her for her last 11 days. We watched her pain levels and would use additional morphine when she was bathed or moved. When you spend 24 hours a day with someone you can see the changes and know when the pain level is rising. We also used a self inflating mattress cover that rotated the pressure on the body every 1/2 hour. If your keeping your mother at home and she is not moving much you might want to look into this. Comfort can be come in all sorts of packages. A burning candle with our favorite scent, pictures or some nice soft sheets on the bed. I am sure the largest comfort measure for your mother is you. But you need a break Anne and I can read it in your letters. Either a friend of your mothers or a health care nurse that could come for a bit. I am sorry you don't have a larger family to draw from for support. Prayers and hugs. Slickwilly

AnneS

slickwilly said:

Being comfortable
Hi Anne. I can only relate what I have seen and been through. I had cancer 6 years ago and and life took me down a path of helping others. I am not a doctor and would never claim to know everything about dealing with all the different types of cancer and treatments. Each case is different and everyone has their own issues to deal with. Its always a balancing act with medications when it comes to comfort. My sister recently passed at my mothers home where we kept her for her last 11 days. We watched her pain levels and would use additional morphine when she was bathed or moved. When you spend 24 hours a day with someone you can see the changes and know when the pain level is rising. We also used a self inflating mattress cover that rotated the pressure on the body every 1/2 hour. If your keeping your mother at home and she is not moving much you might want to look into this. Comfort can be come in all sorts of packages. A burning candle with our favorite scent, pictures or some nice soft sheets on the bed. I am sure the largest comfort measure for your mother is you. But you need a break Anne and I can read it in your letters. Either a friend of your mothers or a health care nurse that could come for a bit. I am sorry you don't have a larger family to draw from for support. Prayers and hugs. Slickwilly

Hi Slickwill,
Firstly: I am
Hi Slickwill,

Firstly: I am very sorry for your recent loss. It must have been a difficult time for you and you mother:(

And yes, couldn't agree more: people who are the best placed to evaluate what is happening pain/comfort wise are the CGs.

A break is long overdue, but I am just not sure who to ask to look after her. It is degrading for her to have a colleague/friend look after her (guaranteed she will have a diarrea episode then...). A friend wants to head out for drinks next week, and I would love to. Knowing my mother she will not find it necessary that someone looks after her (she is not bedridden). Maybe a couple of hours will be ok.

A

slickwilly

AnneS said:

Hi Slickwill,
Firstly: I am
Hi Slickwill,

Firstly: I am very sorry for your recent loss. It must have been a difficult time for you and you mother:(

And yes, couldn't agree more: people who are the best placed to evaluate what is happening pain/comfort wise are the CGs.

A break is long overdue, but I am just not sure who to ask to look after her. It is degrading for her to have a colleague/friend look after her (guaranteed she will have a diarrea episode then...). A friend wants to head out for drinks next week, and I would love to. Knowing my mother she will not find it necessary that someone looks after her (she is not bedridden). Maybe a couple of hours will be ok.

A

Breaks
Anne. Thanks for the kind words. I have a great caring family and taking care of my sister was a blessing. I stayed every night and my mother and step-father handled the days. I completly understand your mothers need to maintain her dignity. It seems to be one of the first things we lose during all of the testing and operations to deal with cancer. As a veterinary surgeon you have a great medical background to draw from. Just don't start checking your mother for a wet nose unless she gets a cold. I will say I have nothing but respect for you as you have put your life on hold for your mother. I suspect you have a very big heart Anne. I think it would be great if you could get away for a bit. Don't be afraid to set down a few rules as you are in this struggle with your mother together. Like not using the stove or trying to take a bath when your away. Its easy for us to forget that we have something on the stove and I thank God for smoke detectors as I have burnt all sorts of stuff. And the neighbors don't like it when water is running into their apartment. And you can always call a few times if you feel its needed. If you like feel free to contact me through the message area by clicking on CSN Home at the top of the page. Or you can e-mail me at slickwilly007@msn.com I enjoy talking to you and never have enough friends. Slickwilly

AnneS

slickwilly said:

Breaks
Anne. Thanks for the kind words. I have a great caring family and taking care of my sister was a blessing. I stayed every night and my mother and step-father handled the days. I completly understand your mothers need to maintain her dignity. It seems to be one of the first things we lose during all of the testing and operations to deal with cancer. As a veterinary surgeon you have a great medical background to draw from. Just don't start checking your mother for a wet nose unless she gets a cold. I will say I have nothing but respect for you as you have put your life on hold for your mother. I suspect you have a very big heart Anne. I think it would be great if you could get away for a bit. Don't be afraid to set down a few rules as you are in this struggle with your mother together. Like not using the stove or trying to take a bath when your away. Its easy for us to forget that we have something on the stove and I thank God for smoke detectors as I have burnt all sorts of stuff. And the neighbors don't like it when water is running into their apartment. And you can always call a few times if you feel its needed. If you like feel free to contact me through the message area by clicking on CSN Home at the top of the page. Or you can e-mail me at slickwilly007@msn.com I enjoy talking to you and never have enough friends. Slickwilly

Lol re wet nose:) Yes, in
Lol re wet nose:) Yes, in many ways I am lucky because I can provide medical care at home, but there are many times I have thought: would be really nice to know less, as it FREAKS me out thinking of all the things that could go wrong. The other day we had to go to the emergency room, and they placed her on the wrong type of fluids, which I then (politely) pointed out. Oops. But right there, I couldn't help but think 'would have been nice to just think 'we are in great hands', no need to worry. But it is almost impossible for me not to double check things, ask for blood results etc.
I am not sure I want to practice medicine anymore though. Yes, I love the diagnostic work-up and actually wanted to specialize. But these last months, I have been pretty disgusted at times with the care that my mother was provided with.

Yes, I agree with you: it is such a privilege to be able to help!

Thanks for wanting to keep in touch: will def take you up on that!

My mum is quite the independent woman... 'she don't need anyone to watch out for her etc etc'. And can be a little difficult to get to obey rules (she forgets, especially when her pain medication is off, i.e. too much morphine). The other day I found my 18 mth old labrador happily locked in with ALL the meds... now she eats EVERYTHING... but thankfully had decided not to on this occasion:)

Hugs!

Anne

slickwilly

AnneS said:

Lol re wet nose:) Yes, in
Lol re wet nose:) Yes, in many ways I am lucky because I can provide medical care at home, but there are many times I have thought: would be really nice to know less, as it FREAKS me out thinking of all the things that could go wrong. The other day we had to go to the emergency room, and they placed her on the wrong type of fluids, which I then (politely) pointed out. Oops. But right there, I couldn't help but think 'would have been nice to just think 'we are in great hands', no need to worry. But it is almost impossible for me not to double check things, ask for blood results etc.
I am not sure I want to practice medicine anymore though. Yes, I love the diagnostic work-up and actually wanted to specialize. But these last months, I have been pretty disgusted at times with the care that my mother was provided with.

Yes, I agree with you: it is such a privilege to be able to help!

Thanks for wanting to keep in touch: will def take you up on that!

My mum is quite the independent woman... 'she don't need anyone to watch out for her etc etc'. And can be a little difficult to get to obey rules (she forgets, especially when her pain medication is off, i.e. too much morphine). The other day I found my 18 mth old labrador happily locked in with ALL the meds... now she eats EVERYTHING... but thankfully had decided not to on this occasion:)

Hugs!

Anne

parents
Well Anne, our parents fight all their life to be independent and its like pulling teeth when we try to take over and help. And each case is different as we all age at our own pace. Each family has different resources to draw from. Or many times as I have seen here lately there is a sole family member that is dealing with everything. I guess there is something to be said about our older generation that had big close families.
Your mum is very lucky she didn't raise a self centered daughter or she would be sitting in a hospital or home by herself. It seems that no matter where we are in the world we have to be our own advocate when it comes to medical issues. Mistakes are made all the time and it seems that doctors and hospitals along with governments are each looking out for their own self interest instead of the patients. The patient seems to be at the bottom of the pile. So I can see why you would get disgusted with the system.
Well you have a good day. I am getting ready for a weekend of camping in the woods. Sit by a fire, play cards and fight off the bugs. Life is good ha ha. Hugs Slickwilly

AnneS

slickwilly said:

parents
Well Anne, our parents fight all their life to be independent and its like pulling teeth when we try to take over and help. And each case is different as we all age at our own pace. Each family has different resources to draw from. Or many times as I have seen here lately there is a sole family member that is dealing with everything. I guess there is something to be said about our older generation that had big close families.
Your mum is very lucky she didn't raise a self centered daughter or she would be sitting in a hospital or home by herself. It seems that no matter where we are in the world we have to be our own advocate when it comes to medical issues. Mistakes are made all the time and it seems that doctors and hospitals along with governments are each looking out for their own self interest instead of the patients. The patient seems to be at the bottom of the pile. So I can see why you would get disgusted with the system.
Well you have a good day. I am getting ready for a weekend of camping in the woods. Sit by a fire, play cards and fight off the bugs. Life is good ha ha. Hugs Slickwilly

Sounds like you have a
Sounds like you have a lovely week-end planned!! Where abouts are you in the US??? (not that I am familiar with the US... have only ever been to New York).

slickwilly

AnneS said:

Sounds like you have a
Sounds like you have a lovely week-end planned!! Where abouts are you in the US??? (not that I am familiar with the US... have only ever been to New York).

Hi Again
Hi Anne. Upper Michigan. The picture is Lake Superior from my mothers beach. I'll shoot you a letter on your CSN site so we don't tie up the boards with personal stuff. Catch you in a bit. Slickwilly