Advice needed

worriedsick123

I have asked questions on this site about my MIL before and have some more now that she is in treatment. She is doing the radiation daily for 6 weeks and the mitomycn(SP) and fu5 too she did that the first week and has to do it again the 5th week. She is now finished with her 3rd week of radiation. We are having lots of problems with her following Drs orders, she refuses to eat has lost 14 lbs since treatment began we have tried everything the boost drinks and she says she dont like them, she would not drink anything now she has to do IV fluids 2 times a week for 2 hours because she is dehydrated. she has the silver sulfide cream to use on her bottom but she wont do it, they have given her things to put in a sitz bath to help with the pain she wont do them either, we cant hardly get her out of bed except to go to the dr. She sleeps until her drs appointments gets up and goes comes home and goes straight back to bed she has become dependant on others to do everything for her when before she could do everything for herself but now she refuses to. We dont know what to do. She seems to me like she has given up and just dont care we can barely get her to take a shower. She is 71 yrs old and the Dr told her if she does what she is supposed to this cancer is very treatable. Im run down and tired from having to beg her to eat and drink and get up and move around i dont know where to turn. My husband tries and she only ends up screaming at him that she is tired of people trying to control her. Any advice on what to do from here?

sephie

so sorry

you are doing all that you can.   she has to want to do this and seems to have chosen not to do it.   please try to be nice to yourself... i know that you do not want to see her this way but it is her way...this is a very very hard, barbaric and excrutiating treatment... it really would have been easy to give up on even trying but most of us chose to do what ever it takes to finish this tx.   i do not have any words except ask doc if they can perhaps give her something to help her mood, if she will take it... she probably is depressed and i know that she is tired...  take care .....    sephie

Lorikat

My mom was just that age with

My mom was just that age with CHF when she decided to take to her bed.  We tried to get her up more but she was like your mil and didn't want anyone to tell her what to do, but wanted everyone to do what SHE wanted.  We hired a helper and did the best we could but remember, unless she has dementia, she is an adult ... You really can't make her...  Medicare, if you are stateside will pay for a caregiver to come in and bath her and other things she wll hate it but MIGHT decide to helpout..  Hugs

Phoebesnow

Lorikat said:

My mom was just that age with

My mom was just that age with CHF when she decided to take to her bed.  We tried to get her up more but she was like your mil and didn't want anyone to tell her what to do, but wanted everyone to do what SHE wanted.  We hired a helper and did the best we could but remember, unless she has dementia, she is an adult ... You really can't make her...  Medicare, if you are stateside will pay for a caregiver to come in and bath her and other things she wll hate it but MIGHT decide to helpout..  Hugs

Tx

I could not imagine going thru this tx at her age.  My heart breaks for her on so many levels.  I'm sorry it is so difficult to care for her.  Soon it will be over and behind you both.   I felt as if I wasn't really living during those six weeks, I just prayed for each day to end.  I prayed endlessly, it was the only thing that helped, gods loving embrace.

1linde

so sorry

To be fair to your mil, I was very fatigued my third week of treatment, both times after the chemo rounds.  I also hid out in my bedroom but I did my best to not cause concern for my family and just kept things to myself.

 

You do sound like you are doing all you can. Why she is refusing to do things that may help her, I can't tell you. I found the sitz bath and episiotomy bottle  very key to relieving my pain. My doctor did not believe in any creams excrpt for aquaphor and that helps.

Have you shared your concerns with her doctors. They may have some useful advice or be able to refer her to somoene that can help her as it sounds like depression, exhaustion, etc.

My mom gets like this sometime and is just in a nursing home, she sometimes get depressed and feels sorry for herself that she has to suffer. It is hard as I have not found a way to get through to her, it usually passes and then returns.

Let your mil know that you have found an entire group of women here who have survived the treatment and are now thriving. I don't think anyone would guess I went through treatment 18 months ago. It is curable and life continues. There are side effects but I am happy to be alive. My oncologist used to tell me I was lucky because if the first treatment didn't work there was a plan b of surgery and many cancer patients cannot be cured nor do they have additional options for a cure.

Best wishes, she is halfway there. My pain became acute at the end and if this happens to your mil she may be open to help. I did take an antideppressant during treatment at the suggestion of my oncologist and don't know if it helped or not but I didn't take it over two months, has any of her doctors suggested that?

worriedsick123

1linde said:

so sorry

To be fair to your mil, I was very fatigued my third week of treatment, both times after the chemo rounds.  I also hid out in my bedroom but I did my best to not cause concern for my family and just kept things to myself.

 

You do sound like you are doing all you can. Why she is refusing to do things that may help her, I can't tell you. I found the sitz bath and episiotomy bottle  very key to relieving my pain. My doctor did not believe in any creams excrpt for aquaphor and that helps.

Have you shared your concerns with her doctors. They may have some useful advice or be able to refer her to somoene that can help her as it sounds like depression, exhaustion, etc.

My mom gets like this sometime and is just in a nursing home, she sometimes get depressed and feels sorry for herself that she has to suffer. It is hard as I have not found a way to get through to her, it usually passes and then returns.

Let your mil know that you have found an entire group of women here who have survived the treatment and are now thriving. I don't think anyone would guess I went through treatment 18 months ago. It is curable and life continues. There are side effects but I am happy to be alive. My oncologist used to tell me I was lucky because if the first treatment didn't work there was a plan b of surgery and many cancer patients cannot be cured nor do they have additional options for a cure.

Best wishes, she is halfway there. My pain became acute at the end and if this happens to your mil she may be open to help. I did take an antideppressant during treatment at the suggestion of my oncologist and don't know if it helped or not but I didn't take it over two months, has any of her doctors suggested that?

She will not be truthful with

She will not be truthful with her drs. They ask if she has any pain she tells them no which is not true i hear her in the bathroom screaming out in pain if i say something to her about it she gets mad and said it was only a little bit of pain. the drs ask if she has Diarrhea, she tells them no but she does they ask if she eats she says yes but she doesnt. WHen i tell them otherwise she gets angry at me and screams in the Drs office which is highly embarrassing. I know she is proud, but the Drs cant help her if she doesnt tell them what is going on.  Im not sure how much weight they will allow her to lose before doing something about it. does anyone know?

 

Lorikat

worriedsick123 said:

She will not be truthful with

She will not be truthful with her drs. They ask if she has any pain she tells them no which is not true i hear her in the bathroom screaming out in pain if i say something to her about it she gets mad and said it was only a little bit of pain. the drs ask if she has Diarrhea, she tells them no but she does they ask if she eats she says yes but she doesnt. WHen i tell them otherwise she gets angry at me and screams in the Drs office which is highly embarrassing. I know she is proud, but the Drs cant help her if she doesnt tell them what is going on.  Im not sure how much weight they will allow her to lose before doing something about it. does anyone know?

 

I really think it is very

I really think it is very hard for our moms to admit to such... They also do not like to give up control.  My Mom used to get mad at me if I talked to the doctors for or about her.  She said it made her feel invisible.  I never did really figure out the right way totake care of her.....  It was always too much or too little....  I feel for both of you from the bottom of my heart.....  My mom is gone now, since October and I still try to figure out what I old have done different.  The last few years I would slip a note in to the doc with my observations so I wouldn't be butting in" and that seemed to help some.    Bless you both

Marynb

worriedsick123 said:

She will not be truthful with

She will not be truthful with her drs. They ask if she has any pain she tells them no which is not true i hear her in the bathroom screaming out in pain if i say something to her about it she gets mad and said it was only a little bit of pain. the drs ask if she has Diarrhea, she tells them no but she does they ask if she eats she says yes but she doesnt. WHen i tell them otherwise she gets angry at me and screams in the Drs office which is highly embarrassing. I know she is proud, but the Drs cant help her if she doesnt tell them what is going on.  Im not sure how much weight they will allow her to lose before doing something about it. does anyone know?

 

Worriedsick123
Hi. Your MIL is so lucky to have you and your husband to help her! Hang in there. You are heading into the worst of it. Are there any foods that she will eat at all? Maybe the smell of soups cooking would stimulate her appetite? Custards? I know that uring treatment, my diet was very limited. There were many days I ate only baked potato, chicken soup, bagel, custard. It was an all white diet. Also, I am not a soda drinker, but for some reason all natural ginger ale really appealed to me. As an old lady myself, I understand the need to feel a sense of control. If she needs to sleep during treament, that should be fine. Whatever it takes to get through this. I am not sure about medications for depression, but maybe ask the doctors.
I am a mother and what motivated me to do my best in treatment was the thought of my daughter worrying or suffering in any way. My love for her helped me to stay positive and do my best. Maybe if you could speak to her alone and tell her that her son still needs her and that she has to try her best for his sake?

Your family will be in my prayers. Take good care of yourself!

mp327

worriedsick123

It sounds to me like depression is a major issue with your MIL at this time.  It is understandable, given the fact that she is going through a brutal treatment for a cancer diagnosis.  If you are unable to speak the truth to her doctors in her presence, my suggestion would be to write him/her a detailed letter of all you are dealing with regarding her care and her refusal to cooperate.  Make sure the doctor sees it just prior to her next appt.  IMO it is the doctors' jobs to address these issues and do what is necessary to help her.  An anti-depressant may help her, but as you have stated, getting her to take anything is nearly impossible.  You are trying your best to help her through this, so please do not beat yourself up because she is not cooperative.  To use an old saying, "you can lead a horse to water, but you can't make them drink."  Your MIL obviously needs help and I hope her doctors will address this.   

eihtak

worriedsick123......

Wish I had words of wisdom....being a caregiver to a loved one in this situation can be one of the most difficult tasks in the world. My husbands attitude was much the same at one time (he had a bone marrow transplant). I was often sooooo angry with him. I was able to communicate with his doctors outside of his presence and that may have helped a bit, but it wasn't until (during his early recovery time) that I was diagnosed with anal cancer that he really switched gears. He was put on a "mood elevator" for a while and that made some difference too.

During my treatment I had some minor complications and also lost a great deal of weight. I think????? for the most part my attitude was acceptable, but I could not keep ANY food down even if I wanted. I was put on a nutritional supplement (TPN) that was administered via IV for 24hrs a day, later switched to 12hrs. I spent a couple months in a nursing home, but have to admit I sure felt better getting that nutrition in me and slowly was again able to eat! In the home, I also got extra help with pain management and physical therapy.......would the idea of a home care nurse or short term care be an option??

You'll both be in my thoughts and prayers!

worriedsick123

thank you for all of the

thank you for all of the advice. the one thing im wondering about is, is it normal for her to sleep 22 hours a day? the only thing she wakes up for is to go to the dr and to go to the bathroom. I do understand thses treatments make you tired and weak i just didnt know if that was good for her to be in bed sleeping so much

mp327

worriedsick123 said:

thank you for all of the

thank you for all of the advice. the one thing im wondering about is, is it normal for her to sleep 22 hours a day? the only thing she wakes up for is to go to the dr and to go to the bathroom. I do understand thses treatments make you tired and weak i just didnt know if that was good for her to be in bed sleeping so much

worriedsick123

If she is suffering from depression, that could be part of the reason she is sleeping so much.  It's pretty common.  I think sometimes when people have given up, that is a way to not have to deal with any of their feelings or emotions.

worriedsick123

mp327 said:

worriedsick123

If she is suffering from depression, that could be part of the reason she is sleeping so much.  It's pretty common.  I think sometimes when people have given up, that is a way to not have to deal with any of their feelings or emotions.

Just an update for everyone.

Just an update for everyone. I did adress these issues with her Dr last Monday and nothing really got resolved. He did have a social worker come in and talk to her and told us she was most likely depressed. They asked her if she would be willing to try medication to improve her mood to which she said no. She wont take the meds she is supposed to now. I do not see anything improving she still isnt eating. Here is what she as ate so far this week, mon-2 small bites mashed potatoes, tue. a little bit of chicken noodle soup, wed small amount of ice cream, thur half if a whie castle burger, fri- nothing sat, 2 bites of ramen noodles and she hardly drinks anything at all. she has raging diariaha and wont take her immodium. She is still sleeping all the time. the only time she is out of bed is when we go to the DR. The Dr told her on monday she will get blood clots if she doesnt get up and mover around. She seems as if she is hearing what we are telling her and what the DR is telling her and she agrees but she never does what she is supposed to do. I just dont understand it. She is starting to get very forgetful where she dont even know what she did 5 min ago. she thinks she eats when she doesnt and she is starting to get very mean and nasty in the way she talks to us. Do i just leave her a lone and let her do her own thing or what?

mp327

worriedsick123 said:

Just an update for everyone.

Just an update for everyone. I did adress these issues with her Dr last Monday and nothing really got resolved. He did have a social worker come in and talk to her and told us she was most likely depressed. They asked her if she would be willing to try medication to improve her mood to which she said no. She wont take the meds she is supposed to now. I do not see anything improving she still isnt eating. Here is what she as ate so far this week, mon-2 small bites mashed potatoes, tue. a little bit of chicken noodle soup, wed small amount of ice cream, thur half if a whie castle burger, fri- nothing sat, 2 bites of ramen noodles and she hardly drinks anything at all. she has raging diariaha and wont take her immodium. She is still sleeping all the time. the only time she is out of bed is when we go to the DR. The Dr told her on monday she will get blood clots if she doesnt get up and mover around. She seems as if she is hearing what we are telling her and what the DR is telling her and she agrees but she never does what she is supposed to do. I just dont understand it. She is starting to get very forgetful where she dont even know what she did 5 min ago. she thinks she eats when she doesnt and she is starting to get very mean and nasty in the way she talks to us. Do i just leave her a lone and let her do her own thing or what?

worriedsick123

Dealing with my own mother, who has dementia, I am struck by your last few sentences.  You state that she doesn't do what the doctors tell her, even though she seems to hear their instructions, and that she is getting forgetful.  Also, the change in her personality is a red flag.  It sounds to me that not only may she be depressed, but she also may have dementia.  The two can go hand in hand.  My mom started getting depressed when her dementia was in the early stages.  She is now on an anti-depressant.  She cannot remember what she had for a meal, even minutes afterwards, and forgets everything almost immediately anymore.  I spent 4 days with her the week before Easter and she doesn't recall any of it.  The only things she still remembers pretty clearly are events/people way back in her past.  She also sleeps a lot more than she used to, especially during the day.  Unfortunately, there is nothing that can be done for dementia and it is a progressive disease.  I can only imagine how frustrating this is for you and my heart goes out to you.  The good news in my mom's case is that she has not become mean or nasty, as you state your MIL has.  She continues to be cooperative in taking her meds, which are given to her daily by nurses at the assisted living home where she now resides.  If it was left up to her to take them on her own, she wouldn't be able to handle it due to her poor memory.  I really don't have a suggestions for you, as I said, if it is dementia, nothing can really be done.  Please keep us posted.     

pializ

mp327 said:

worriedsick123

Dealing with my own mother, who has dementia, I am struck by your last few sentences.  You state that she doesn't do what the doctors tell her, even though she seems to hear their instructions, and that she is getting forgetful.  Also, the change in her personality is a red flag.  It sounds to me that not only may she be depressed, but she also may have dementia.  The two can go hand in hand.  My mom started getting depressed when her dementia was in the early stages.  She is now on an anti-depressant.  She cannot remember what she had for a meal, even minutes afterwards, and forgets everything almost immediately anymore.  I spent 4 days with her the week before Easter and she doesn't recall any of it.  The only things she still remembers pretty clearly are events/people way back in her past.  She also sleeps a lot more than she used to, especially during the day.  Unfortunately, there is nothing that can be done for dementia and it is a progressive disease.  I can only imagine how frustrating this is for you and my heart goes out to you.  The good news in my mom's case is that she has not become mean or nasty, as you state your MIL has.  She continues to be cooperative in taking her meds, which are given to her daily by nurses at the assisted living home where she now resides.  If it was left up to her to take them on her own, she wouldn't be able to handle it due to her poor memory.  I really don't have a suggestions for you, as I said, if it is dementia, nothing can really be done.  Please keep us posted.     

worriedsick123

The symptoms of dementia could also be caused by her depression, which isn't helped by her being nutritionally deprived. It sounds like she would be best off being admitted to hospital. She is really unwell & it sounds like it is too much for anyone person to support.  She needs inpatient support at the moment. Whatever the cause of her being down or forgetful, I would suggest you discuss hospitalisation at the moment. 

eihtak

worriedsick123....

I am so sorry for your situation. I agree that for all involved if being admitted temporarily to a hospital or short term care facility is possible, that would help. Sometimes this is just not an option though. Maybe a home-care nurse could be more convincing with meds or food????? If admitted they would be able to administer IV meds and nutrition and also make her burns more comfortable. Many of us here (average age 50 something) have been hospitalized at some point during treatment for related issues, at 71 she must be suffering (as are you also).

I will keep you in my thoughts and prayers that you find the help needed soon.....

pializ

eihtak said:

worriedsick123....

I am so sorry for your situation. I agree that for all involved if being admitted temporarily to a hospital or short term care facility is possible, that would help. Sometimes this is just not an option though. Maybe a home-care nurse could be more convincing with meds or food????? If admitted they would be able to administer IV meds and nutrition and also make her burns more comfortable. Many of us here (average age 50 something) have been hospitalized at some point during treatment for related issues, at 71 she must be suffering (as are you also).

I will keep you in my thoughts and prayers that you find the help needed soon.....

worriedsick 123

Was just wondering how MIL is. Hope things improved. Liz

lowens

Advice still needed?

I am so sorry to have just come back to the site to find this. How is the patient?

jj65

worriedsick123 said:

thank you for all of the

thank you for all of the advice. the one thing im wondering about is, is it normal for her to sleep 22 hours a day? the only thing she wakes up for is to go to the dr and to go to the bathroom. I do understand thses treatments make you tired and weak i just didnt know if that was good for her to be in bed sleeping so much

sounds like depression to me

unless you have gone through with all the chemo , radiation and exams  . Its hard to understand why someone goes into depression. At her age i am sure that it is really hard for her to handle and she has withdrawn from coping with it .  I am 66 years old and had to do all of those things and Praise the Lord He has brought me through it.. I am so sorry and will be praying for your situation God bless