I really need some advice
Two days after her first treatment she came and stayed with us for a week. We are her closest relatives and we live 2 hours away. She was VERY weak and became very dependent. She would complain of not being able to walk down my hallway which is only about 30 feet long. She said a can of soup was too much for her to lift, she rarely got out of bed and she was even wetting herself at times, she would not make any necessary phone calls to her doctors we did everything for her. Her doctor is the one who made her go back home saying that she HAD to be there for her next appointment. We couldn't stay with her because my husband works 60 hour weeks and we have 2 young school age children. She also seemed to be doing a little better and wanted to be alone. She is a very private/strong willed person. She is also a hoarder which complicates things.
Fast forward to now... I believe she just recently had her second treatment. Yesterday evening, we received a call from a friend of hers who was at her house. No one had heard from her for a couple of days so her neighbor came over and forced her way inside to check on her. Her neighbor found her collapsed in the hall in a puddle of urine, unable to get up, where she had been for almost 2 days. She was conscious the whole time... She said she collapsed due to weakness. Her neighbor called another friend who came over and when they could not get her off the ground they then called us. My husband told them to hang up and call 911. She was transported to the hospital where she still is. My husband is with her now. The 911 responders reported her living conditions to Adult Protective Services so, more than likely, she wont be able to return home. We're hoping it will force her to come stay with us.
What I'm wondering is, is it normal to be this weak during chemo treatments? Should the chemo be effecting her like this?
Do people normally have surgery before starting treatment?
Can anyone give us any advice? Since I can't get any information from her or her doctors, I just don't know what to do. I am also wondering if it will be difficult to move her care and treatments to our area if she does come and stay with us.
Any advice or insight is greatly appreciated!
Thank You
Comments
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wow
I was weak and achy for 4-5 days post chemo, but nothing like what your MIL is experiencing. I really couldn't tell you why she is the way she is, but I'm glad she is getting the care she needs now.
I had surgery before chemo, but not everyone does. Sometimes they do chemo and possibly radiation before surgery.
I would really try to go to one of her Dr appointments so that you can get some answers from the Dr. Hopefully moving her appointments to closer to you won't be a problem. Sounds like she really needs round the clock care.
I'm sorry she (and you) are going through this and I hope you get some answers.
Lots of prayers...
Patti Anne0 -
Mother-in-Law Problems
Omg,Swmpgrl, you have quite the situation on your hands. In order to get a handle on your mother in law's medical status you have to be able to talk to her doctors. If she will not let you talk to her doctors then due to privacy laws they cannot fill you in no matter how much they might want to do so. Will she give you a Power of Attorney for Healthcare? You might want to consult an attorney and file for a conservatorship. If she has mental health issues (ie. being a hoarder;clinical depression) as well as significant health issues maybe it is best that she not have control over her affairs. Sounds like she is utterly unable/unwilling to care for herself in a number of ways. Speak to someone who specializes in Elder Law. Think VERY hard about whether it is the right thing for you and your family to bring her into your home. It may be more than you can reasonably handle.
While everyone is different, it does seem like her reaction to the chemo is outside the range of "normal." Of course, everyone is different in how their body tolerates the various medications. I had 16 rounds of chemo myself. There were days where it was all I could do to undress, shower, and get dressed again but I NEVER collapsed or loss control of my bladder. In my case I had surgery and the chemo came afterwards. I did not have radiation. There are a lot of women on this board who had chemo and/or radiation and their surgery came last. There are a lot of variables. If she does come to your area her current doctors can be of help in providing her new physicians copies of her records and their treatment plan. You will have to make sure that any new doctor accepts her insurance (Medicare/Medicaid?)
Please let us know how this goes for all of you. My thoughts are with you during this difficult period of time.
IRENE0 -
My opinion
My opinion (which many may not like) - do not bring her to your home with small children there AT THIS TIME. Your CHILDREN should be your prime concern. Clearly she needs help but she needs professional help and your children do not need to be subjected to what she is going through on a 60/24 basis. Yes, they do need to know (appropriate to age) the reality of what she is going through but they don't need to live it every second/minute/hour/day.
Your MJIL will be in my prayers (as will all of you) but i really think tath the best place for her is not in your home.
Susan0 -
good ideas
Irene has some good ideas: Look into legal conservatorship, and consider carefully if you can realistically take care of her full-time in your home. Maybe see if there is some way of getting home health care to help out. Check and see if your State has an organization that can help out with elder care. If you can get her medical services closer, check with the hospital for a social worker, or someone to help with these issues. Talk to her insurance company, or medicare, if she qualifies. Contact the American Cancer Society in your area and see what help/advice they may have.
As far as her weakness is concerned, I would be curious about her condition before she started treatments. From your description of her living conditions and state of mind I would not be surprised if she has not been eating well for a while or getting enough rest and exercise. Chemo can make many people weak and sick, but I have not heard of such an extreme reaction.
I wish you and your family well, seof0 -
Sounds like..Rague said:My opinion
My opinion (which many may not like) - do not bring her to your home with small children there AT THIS TIME. Your CHILDREN should be your prime concern. Clearly she needs help but she needs professional help and your children do not need to be subjected to what she is going through on a 60/24 basis. Yes, they do need to know (appropriate to age) the reality of what she is going through but they don't need to live it every second/minute/hour/day.
Your MJIL will be in my prayers (as will all of you) but i really think tath the best place for her is not in your home.
Susan
Sounds like there is more going on with your MIL's health than just chemo....if she is in the hospital, in this present state, more than likely she has been assigned a social worker....if not, request one...every hospital has them...the social worker can help you navigate possible solutions...
BUt I have to agree with Rague....personally, with you having young children, I would not bring her into your home AT THIS TIME...it maybe more than you can handle...I understand how difficult this is for you and your husband.....it's a tough call but in her present state it will most likely put a tremendous strain on your family....and it usually falls to the wife....not only does her physical health need to be assessed but also her mental health...that's truly a job for professionals....especially with her being a hoarder...
I wish you and your family the best....0 -
I had chemo before surgery
My tumors were large, 6cm and 3cm, and they had to shrink them. So I had 4 cycles before surgery and 4 cycles after and then 6 weeks of radiation. Chemo made me very weak and sick but I never collapsed or had urination problems.
So sorry.0 -
My opinion--I don't think
My opinion--I don't think you should have her live with you. It sounds like she needs to be where she can get 24 hour care from professionals. I agree with the others who said it sounds like there's more going on here. Her house may be in such a mess that she can't live there, but when both my parents had cancer and were dying (at the same time), I hired a health-care person to stay with them during the week. I had young children, and a job. Then I would spend the weekends with my parents.0 -
Thanks Everyone!
Thank you so much for all of your responses and for sharing your advice and experiences with me!! I have been trying to pass the suggestions on to my husband but I don’t think any of it is really sinking in. So I’m heading down to the hospital tomorrow morning to try to get some answers that they don’t seem to be asking.
I also share the concern of bringing her into our home. I do love her BUT, even in a “healthy” state she has always been a difficult woman to deal with. Unfortunately, I might not have much of a choice. My husband is an only child and she raised him by herself since he was 2. The hoarding started about 20 years ago, shortly after we married and moved away. The few friends she hasn't pushed out of her life can't physically take care of her. Those friends are, as I type, cleaning out her house even though it will likely mean the end of their friendship with her. I would love to hire someone to care for her in her home but there is NO way she will ever let them past her front door. If we attempt to get a power of attorney or try to convince her to go to an inpatient facility I expect a very long hard fight. My husband shares my concerns but he naturally feels very obligated to either move her into our home or closer to us so we can keep an eye on her. We have even been talking about buying a small used RV to stick in our drive for her to live in. That way we can keep an eye on her and be here to help but she's not right under foot and she will still feel like she lives alone.
Her health wasn't great to begin with and she rarely leaves her house to do anything other than to get groceries. She is overweight, never eats healthy and gets no exercise. Even when we cook for her, she'll just pick through it and wait until everyone is gone and eat anything less healthy she can find. You would never know that she used to be a professional model. She was and still is on a lot of different medications for anxiety, depression, blood pressure, and a host of other issues that I'm sure were psychosomatic. I believe this is why she doesn't allow us to talk to her doctors.
So I know my family and I are in for a long hard ride but it looks like it's something we're going to have to do. Luckily, we have a lot of really good friends that we know will be there to help in a second when we need to call in the Calvary.
Thank you all again for sharing your advice and experiences with me. I really appreciate it. and Thanks for putting up with my long winded letters!
Rayne0 -
Sounds like you have a lotSWMPGRL said:Thanks Everyone!
Thank you so much for all of your responses and for sharing your advice and experiences with me!! I have been trying to pass the suggestions on to my husband but I don’t think any of it is really sinking in. So I’m heading down to the hospital tomorrow morning to try to get some answers that they don’t seem to be asking.
I also share the concern of bringing her into our home. I do love her BUT, even in a “healthy” state she has always been a difficult woman to deal with. Unfortunately, I might not have much of a choice. My husband is an only child and she raised him by herself since he was 2. The hoarding started about 20 years ago, shortly after we married and moved away. The few friends she hasn't pushed out of her life can't physically take care of her. Those friends are, as I type, cleaning out her house even though it will likely mean the end of their friendship with her. I would love to hire someone to care for her in her home but there is NO way she will ever let them past her front door. If we attempt to get a power of attorney or try to convince her to go to an inpatient facility I expect a very long hard fight. My husband shares my concerns but he naturally feels very obligated to either move her into our home or closer to us so we can keep an eye on her. We have even been talking about buying a small used RV to stick in our drive for her to live in. That way we can keep an eye on her and be here to help but she's not right under foot and she will still feel like she lives alone.
Her health wasn't great to begin with and she rarely leaves her house to do anything other than to get groceries. She is overweight, never eats healthy and gets no exercise. Even when we cook for her, she'll just pick through it and wait until everyone is gone and eat anything less healthy she can find. You would never know that she used to be a professional model. She was and still is on a lot of different medications for anxiety, depression, blood pressure, and a host of other issues that I'm sure were psychosomatic. I believe this is why she doesn't allow us to talk to her doctors.
So I know my family and I are in for a long hard ride but it looks like it's something we're going to have to do. Luckily, we have a lot of really good friends that we know will be there to help in a second when we need to call in the Calvary.
Thank you all again for sharing your advice and experiences with me. I really appreciate it. and Thanks for putting up with my long winded letters!
Rayne
Sounds like you have a lot on your plate. Not everyone has surgery first, a good friend of mine had the chemo before the surgery to reduce the size of the tumor also. Sounds like there is more going on there than she is sharing. Will she allow you or your husband to go to her next Dr. visit?
I would certainly check into getting her a place closer to you. The good thing is if she is too weak and sick to walk, she certainly won't be doing much shopping or hoarding and maybe being closer will give her some added security and love!
Will say some prayers that they can help her and help you!
Carol0 -
YES-chemo IS that bad.
Just throwing in my 2 cents here - when I had chemo it made me EXTREMELY weak. And if she is in poor physical condition now, I can see how it could make her fall and even wet herself. My mom had breast cancer last year also, and on a couple occasions she had also wet herself -in her sleep and not making it to the bathroom quick enough.
I dont think she is over-reacting or acting, chemo is heavy duty stuff and it's side effects are hell. And I was 34 when I had chemo treatments last year, and in great physical condition when I was diagnosed. I was extremely weak and fatigued, sometimes i could literally not walk up the 6 steps in my house to the upper level, and often in the shower i had to have my husband come in there with me to help me and make sure i didnt fall if i passed out -i felt faint often just from standing for several minutes. Chemo affects everyone differently but yes, it is within the normal range for her to be affected this way. I dont know what the fact that it wasn't an "aggressive" cancer has to do with anything but it kind of sounds like you think she may be exaggerating the side effects, when in fact taking these chemotherapy drugs is more than likely the hardest thing your mother in law has had to do-these are drugs that are killing cells throughout her body -not just cancer cells, either. It's horrible what she's going through, and I have been through it myself, along with watching my own mother go through it. The side effects are long lasting & she will need support throughout her chemo as well as afterward. It should not be difficult to find treatment for her if she stays with you, I'm sure there are oncologists in most cities. What she does need is quality care and compassion. Yes, chemo IS that bad. You or your husband should see if she will sign a medical release form so that her doctors can discuss her care with you. I'm not trying to be rude, but she needs someone to care for her. I'm in my 30's and could not take care of myself, I can't imagine how she must feel.0 -
A few comments
First, yes chemo can be and was for me completely debilitating. It destroyed my mom's heart function from 98% to less than 8% in one year. I too had to withdraw from a chemo trial because of the extensive damage chemo can cause. Some chemos are actually a derivitive of mustard gas.
Next, you should definitely seek the help from a Case Worker or Social Worker at her drs office or the hospital. They are trained in this area and have the necessary resources and know what paperwork is required for assistance.
Also there is a section on CSN that is for caregivers. This may be of help to you also. I have been a caretaker for my mom and have faced breast cancer twice.
Cancer is cancer. I hope that people in the field who are trained can provide assistance.0 -
You weren't rudeHeatherbelle said:YES-chemo IS that bad.
Just throwing in my 2 cents here - when I had chemo it made me EXTREMELY weak. And if she is in poor physical condition now, I can see how it could make her fall and even wet herself. My mom had breast cancer last year also, and on a couple occasions she had also wet herself -in her sleep and not making it to the bathroom quick enough.
I dont think she is over-reacting or acting, chemo is heavy duty stuff and it's side effects are hell. And I was 34 when I had chemo treatments last year, and in great physical condition when I was diagnosed. I was extremely weak and fatigued, sometimes i could literally not walk up the 6 steps in my house to the upper level, and often in the shower i had to have my husband come in there with me to help me and make sure i didnt fall if i passed out -i felt faint often just from standing for several minutes. Chemo affects everyone differently but yes, it is within the normal range for her to be affected this way. I dont know what the fact that it wasn't an "aggressive" cancer has to do with anything but it kind of sounds like you think she may be exaggerating the side effects, when in fact taking these chemotherapy drugs is more than likely the hardest thing your mother in law has had to do-these are drugs that are killing cells throughout her body -not just cancer cells, either. It's horrible what she's going through, and I have been through it myself, along with watching my own mother go through it. The side effects are long lasting & she will need support throughout her chemo as well as afterward. It should not be difficult to find treatment for her if she stays with you, I'm sure there are oncologists in most cities. What she does need is quality care and compassion. Yes, chemo IS that bad. You or your husband should see if she will sign a medical release form so that her doctors can discuss her care with you. I'm not trying to be rude, but she needs someone to care for her. I'm in my 30's and could not take care of myself, I can't imagine how she must feel.
You weren't rude Heatherbelle. Thank you for your response. I have never seen anyone close to me go through chemo, everyone else I have known with cancer has either not been close enough for me to offer help or they have chosen not to go through treatments. I was just wondering if what she was going through was in the range of being normal side effects or if I should push for more answers.
My comment about it being a non aggressive cancer was said by her & that was the ONLY information she would or still has given us about what she is going through. She still wont say much to us about what's going on and is livid that we are "trying to be in her business". I am pretty sure that she wont sign a medical release or let us come to her doctors appointments. I know she is terrified right now. When my husband took her to have a port a cath put in, it was the biggest medical procedure she has ever had other than giving birth over 40 years ago. We want to be there for her because she is all alone but she is fighting us every step of the way.
There is an amazing oncologist in my small town only about 5 miles from my house and the hospital is right next door to him, so we would feel better if she did move in with us or at least closer to us but I think someone in authority is going to have to step in and make her leave her home.
Thanks again!
Rayne0 -
...shy violet said:A few comments
First, yes chemo can be and was for me completely debilitating. It destroyed my mom's heart function from 98% to less than 8% in one year. I too had to withdraw from a chemo trial because of the extensive damage chemo can cause. Some chemos are actually a derivitive of mustard gas.
Next, you should definitely seek the help from a Case Worker or Social Worker at her drs office or the hospital. They are trained in this area and have the necessary resources and know what paperwork is required for assistance.
Also there is a section on CSN that is for caregivers. This may be of help to you also. I have been a caretaker for my mom and have faced breast cancer twice.
Cancer is cancer. I hope that people in the field who are trained can provide assistance.
Family or not, do yourself--and your family--a favor; do not move this woman into your home. The aggra-vexation will only cause resentment for everyone. Doesn't sound like your children have had a whole lot of interaction with grandma. Let alone with grandma in THEIR home. I'm just sayin'
And, yes as a matter of fact chemo really can be that bad. However, not usually as bad as you've described. Myself, I did ok with chemo. But, my friend had an absolutely horrific sort of hell that she endured. Complete with urinary incontinence after just the first treatment. Fortunately she stopped wetting herself after 3rd chemo. For about 3-5 days up to her 6th chemo she quite literally was unable to move (not even to get up to throw up after 1st and 2nd.) Eventually she did begin to rebound a little quicker each time. By her 12th chemo she was still queasy but able to care for herself.
The RV in the driveway sounds so much better; gives grandma her privacy while she can still be looked after. Trust me, whatever semblance of life you've got now will only be a wistful memory if Ms. I-don't-need-anyone's-help-I'm-perfectly-content-to-lie-in-my-own-pee-for-2-days moves into the homestead.
Goodness gracious, what kind of message does it send to your kids about grandma's accept no help no-holds-barred warped sense of privacy and other drama?
Maybe a small pet (an older one from the shelter) that would love her unconditionally might alleviate some of her endless stress? You know, like it'd give her something else to dwell on?? She apparently has little need or want for people so maybe a pet could help bring her back to at least being a bit more social.
It doesn't have to be this way for her and I'm sorry that she has to go through this so alone in her belief that she's alone. Perhaps a call to the ACS? They have a lot of resources and are just there to talk as well. Anytime, day or night. 1-800-277-2345
If you lived anywhere nearby (SoCal) I'd be glad to come over and help out. Really, it's the unknowing of what to expect...that's what is so very hard to come to terms with.
Wishing all better tomorrows. Please keep us updated.0 -
I had a rough time withjendrey said:...
Family or not, do yourself--and your family--a favor; do not move this woman into your home. The aggra-vexation will only cause resentment for everyone. Doesn't sound like your children have had a whole lot of interaction with grandma. Let alone with grandma in THEIR home. I'm just sayin'
And, yes as a matter of fact chemo really can be that bad. However, not usually as bad as you've described. Myself, I did ok with chemo. But, my friend had an absolutely horrific sort of hell that she endured. Complete with urinary incontinence after just the first treatment. Fortunately she stopped wetting herself after 3rd chemo. For about 3-5 days up to her 6th chemo she quite literally was unable to move (not even to get up to throw up after 1st and 2nd.) Eventually she did begin to rebound a little quicker each time. By her 12th chemo she was still queasy but able to care for herself.
The RV in the driveway sounds so much better; gives grandma her privacy while she can still be looked after. Trust me, whatever semblance of life you've got now will only be a wistful memory if Ms. I-don't-need-anyone's-help-I'm-perfectly-content-to-lie-in-my-own-pee-for-2-days moves into the homestead.
Goodness gracious, what kind of message does it send to your kids about grandma's accept no help no-holds-barred warped sense of privacy and other drama?
Maybe a small pet (an older one from the shelter) that would love her unconditionally might alleviate some of her endless stress? You know, like it'd give her something else to dwell on?? She apparently has little need or want for people so maybe a pet could help bring her back to at least being a bit more social.
It doesn't have to be this way for her and I'm sorry that she has to go through this so alone in her belief that she's alone. Perhaps a call to the ACS? They have a lot of resources and are just there to talk as well. Anytime, day or night. 1-800-277-2345
If you lived anywhere nearby (SoCal) I'd be glad to come over and help out. Really, it's the unknowing of what to expect...that's what is so very hard to come to terms with.
Wishing all better tomorrows. Please keep us updated.
I had a rough time with chemo, I was weak and debiltated. very dizzy, partially from not being able to drink enough. It did effect me harder than some because my docs said I fell on the bad side of the curve. I was afraid to be home alone in case I would collapse and die and no one would know. I did not have urinary incontinence, but cytoxan does irritate the bladder. One needs to drink lots of fluids to dilute it in your bladder. I did have issues on the "back" end though and did nt always make it to the bathroom.
I can see you are trying to educate yourself to get some perspective. It is really hard when you are dealing with a person with mental health issues to get to the bottom of what they need. Especially if they are resistant, and then knowing how to help them without messing up your own family. it is an excellent idea to get social services involved. I had an excellent social service oncology counselor who helped me with coping. They get it because they see it all the time. Perhaps she would be more receptive to a neutral party. I give you credit for trying to understand rather than just ascribing it to her being dramatic. But as you see the answer is "yes" chemo can be that bad, some people dont experience that but many do. Hugs0 -
Hello Rayne,
Hello Rayne,
Glad you found us as there is diverse group of women and a few men with a lot of knowledge on the chemo/cancer subject. First let me say that your MIL sounds like she was very independent and private prior to her having cancer so having to share such a personal thing such as breast cancer could be quite difficult for her. No one wants to tell their loved ones they have cancer and that they need help. I for one had a very difficult time allowing others to do for me as I had always done for myself and everyone else prior to having cancer and I should have known better because I grew up in a home with a mom who battled cancer (I even took her to her chemo sessions) several times. It can rob the person who has cancer of their privacy, dignity, feelings of self-worth, personal relationships, not to mention what it can do to one monetarily. I for one must say that I would not want to give over power of attorney to my health care as I would feel quite vulnerable and worth less if that were taken from me. I would highly suggest gently and lovingly letting your MIL know that you are so very concerned for her well being and want to better understand her current health issues and that you would like to be able to attend her upcoming dr. appointment so that you are more aware of how you can help. When one has a cancer dx it is always good to have someone with you at your appointments anyway because it is such an emotional illness one often does not hear nor understand half of what the doctor is telling you because you are so overwhelmed. I applaud your MIL’s neighbors who cared enough to find her when she was in distress. I will tell you that during my chemo sessions I not only peed myself but I also pooped myself, it was extremely humiliating to say the least. I also could not walk more then a few feet without losing my balance and becoming exhausted. It took months afterwards for this to pass, I was in great pain in my bones and muscles and had a continuous metal taste in my mouth that made eating not only a chore but unpleasant. Chemo is difficult but doable, it is a means to an end the end being the rest of our lives! Your MIL will likely not return completely to her old healthy self there will be long lasting side effects and they differ from person to person. While she is having chemo she will have severe memory issues, at times you may tell her something and she may not recall it a few moments later, note taking and the leaving of notes is VERY helpful! My husband would leave notes all around the house reminding me to take my meds and he had alarms that went off to remind me as well while he was working. Generally the first week to ten days of each chemo is generally the worst, then she will improve and be more energetic for the next two weeks till her next chemo then she will be back to not feeling well for a week to ten days if she is on the chemo every 3 weeks plan. So you are aware the more chemo she gets the more exhausted, tired and forgetful she will become that’s just how it works.
In regards to children it is important that if they have colds or such (really anyone for that matter) that they be kept away from her as her immune system will be severely compromised while she is on chemo and a little cold can become far worse for someone on chemo. No one was allowed near me during chemo until they had washed their hands with anit biotic soap. My grandchildren lived with me during my last cancer battle and although it was my easiest cancer battle I was still quite sick, weak, bald, forgetful, irritated and sad at times and yet they loved me unconditionally and still do to this day. It made no difference that I was a sick Grandma. My children helped tremendously during my first two cancer battles which lasted nearly 2 years, they were 13 and 15 when the cancer arrived and they handled it very well.
Oh I almost forgot chemo can make you irritable it is a side effect so if she becomes super crabby it is not that she is not appreciative of all you do for her it is that she is ill, tired, frustrated and to top that off the darned drugs have a side effect of making one crabby. Those are the things that come to mind right now, if I think of more I will let you know.
Thank you for seeking out help for her, she will need a lot of love and support as well as a lot of understanding during this very difficult time.
Hope you seek us out in the future if you have concerns, and your MIL may want to as well.
Best of luck and sending prayers your way,
RE0
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