My Mom... Don't Know What to Do!

[wadesgirl]

I mentioned previously that my mom was diagnosed with back of the mouth cancer and has been going through chemo and radition for about 4 weeks now (she has 3 weeks left). I’ve ran into a situation this week that I do not know what to do! My sister believes that she’s at the point where someone needs to start staying with her (even another one of her friends said the same thing). She’s seems to be doing well but just isn’t taking care of herself. So with my sister being in Canada this week, it’s my turn to stay with her. I was with her Monday and Tuesday but due to previous commitments had to come back to my town (1 1/2 hours away) and then will be back up there Friday night. She seems really tired all the time and sleeps a lot but other than that seems to be doing pretty well given the circumstances.
Here’s my problem. When I left her yesterday morning to get to work at 4:30 a.m she was sleeping on the couch. She had woke me up in the middle of the night complaining that she couldn’t hear out of one of her ears. She wanted to go to the ER but I told her that it was a possible side effect of the radiation given the location of the tumor and the radiation. She seems content waiting until the morning to call her doctor. To me ER is for emergencies and there really isn’t much they can do for her in this situation, she needs to talk to her doctor instead. I left her a note yesterday morning to tell her to call me when she got up. At 8:30 I started calling her. I want to guess that I called her about 20+ times yesterday along with texting her. I called her doctor only to find out she didn’t make it to her radiation appointment. I finally called a friend of hers in town to go check on her. The friend had to break in through a window to get in and found my mom still asleep on the couch. This was about 4 p.m. yesterday. I don’t know if she slept there all day or had gotten up at some point and went back to sleep. The friend was unable to wake her (she’s a very deep sleeper) but said she was breathing fine and snoring like crazy.

As of this morning I still have not heard from her. I have called and texted several times. I’m at work right now and cannot leave (even if I wanted to I can’t - DH was sent home early due to no work and has the car!). I left a message and texted her about 30 minutes ago telling her that if I didn’t hear from her by noon I would call the cops and have them break into her house. At this point it seems like my only option!!

I’m sitting at work stressing out about this. I’m being pulled in so many directions right now I’m just about done dealing with her. A little about my mom: she is bi-polar but not on meds, she lies alot to people and has admitted to me in the past that she doesn’t have to tell everybody the truth. So right now I don’t know if she’s just ignoring everybody (the friend said she hadn’t heard from her either after trying to get a hold of her) or if there is something very wrong. She likes attention so things like going to the ER appeal to her along with the fact that she now walks with a cane even though we have seen her walk without it before just fine. Knowing my mom for 30 years, it’s hard to find a line between concerned, caring daugther and trying to not fall for her BS! We have noticed many different times through this whole thing where she’s telling the doctors one thing and us another (she doesn’t know my sister has been talking to the nurses at the same time) and other times when in front of us she omits things or tells half lies to the doctors. We’ve called her out on it before and she just gets flustered and makes some excuse as to why she said what she said. I hate to sound like I’m bashing on my mom but really, honestly she’s not a good person and has been this way my whole life. Where some people have dead beat dads, I grew up with a dead beat mom and have had several times in my life where she has either left us or I’ve chosen myself as an adult to not talk to her because of the way she has chosen to lead her life.

I really have no where else to turn right now. The closest family she has is her dad who's in a nursing home and me and my sister. My sister is vacationing in Canada this week and there is no way to get a hold of her.

 

[vanscootin]

OMG, are you in a difficult position. I started reading, and was like... get up and go to your mom... then I read more and my opinion completely changed. I'm so sorry you have to go through this... being a parent to your own parent stinks... I do it everyday too.

I also lived an hour and a half away from my parents... I made it home hours before my dad died, but I never got to actually speak to him before he died. By the time I got there he was too far gone. He had cancer as well... After that, my mom started to have strokes... after her last one, I decided to move her in with us, because I can't be driving an hour and half twice a day to take care of her. I'm an only child... so I bought us a new house and we now all live together. It is obvious you can't and do not want to be in that kind of position.

Sooo, while I see you care for your Ma, you also don't want to feed into the potential BS. So, I would call the local police, advise them of the situation and ask if they could go check on her. Nothing may be wrong, but something could be really wrong, and even though your relationship is volitile, you may feel bad if something really is wrong and you didn't do anything about it.

Good luck, and let us know how it turns out.

 

[Sheila]

If you guys are checking on her daily, is there a way that you can sneak her meds to her? Check the kitchen & see if there are signs that she got up & ate. If it looks like she's not eating and/or if she's soiling herself in her sleep then you probably need to take her to the ER & possibly admitted for observation, IV fluids, feeding tube, etc. Is it possible that the cancer is causing some of the current issues with her demeanor? If so, you have to try & suck it up. My uncle had a brain tumor & really went off on his daughter there at the end & said a lot of nasty things that he would have NEVER said at any other time in his life. It really hurt her feelings. She was convinced that it was how he had felt all along & didn't really accept that it was the cancer talking.

If she can't take care of herself & doesn't want help, you probably need to consider alternate care ... either home health care or a nursing home.

 

[Sheila]

Oh, and (((HUGS))) Lots & LOTS of (((HUGS)))!!! It's never fun when we have to become the parent & step in.

 

[cookingwithlove]

Wadesgirl, What a terrible place to be in. Perhaps you can check and see if her insurance will pay for a nurse to come in. I know when my Grandfather was sick we were able to have a nurse come in and his insurance paid for it. This might be something that you and your sister can consider doing. This way you can spend time with her with out being the primary care person and hopefully lifts some stress off of you.

 

[Nanisu]

The American Cancer Society has people that volunteer to help with this type of thing. You should contact them.

 

[cookinfletch]

My heart goes out to you! I think I'd have to agree about calling the local police- maybe you could call/ text to let her know what you're going to do. You might even call or text again to let her know that's what you're doing.

 

[Amyskitchen2]

I am so sorry you have to go through this. I have a similar situation with my mom and did call the cops because of her not responding and was fined by the police department (for making a false call) because she was fine and berated me to them (I live 6hrs away). It is a very slippery slope to be on and you will know in your heart what to do. Again, I am so sorry you are going through this.

 

[wadesgirl]

Thanks you guys! I don't have time to respond to each individually. At the time I was sitting at work and had no where else to turn - glad you can be there for me. I finally called her dad and asked if he had heard from her and he said he had not which was highly unusual. So I called the friend back and she went to check and said it looked like mom still hadn't moved from the couch. So at that point we called 911. The cops had to crawl through a window to get to her. She's currently in ICU. They think she has pneumonia. Not sure what exactly happened. She's not responding to anything right now. They did a CT scan and discovered that she doesn't have any brain injuries that could have caused this. They are really concerned that her oxygen was really low when they found her and they don't know how long it was low. Might have done some kind of brain damage. They'll have to wait and see. I just got home and am going to bed. I have to go to work for a little tomorrow but I will head back up there. Please pray!!

 

[Sheila]

Awe, BIG (((HUGS))) Sweetie!!! I'm so sorry that she's not doing well.

 

[Teresa LM]

Well, thank goodness that you were concerned and did call the cops. I hope she will recover and be OK and comfortable for as long as possible. Sorry that you all are having to deal with this.

 

[alidafrizzell]

You will be in my thoughts and prayers! So hard to know what is best... Another option for support is the "local" Cancer Association. Generally each county has one and they are sometimes more geared to help with individual care. I have personally had Breast and Ovarian Cancer and it can be a nightmare... There are support systems out there and it is important for BOTH of you that you use them.... I wish you the best!

 

[Jolie_Paradoxe]

Praying for your mom, your sis and you. What a horrible situation, sending you strength and stamina.

 

[raebates]

No answers, but you have my prayers for both you and your mom.

 

[wadesgirl]

As of this morning nothing much has changed. She can open her eyes but won't focus on anything and won't respond to commands. They are still very worried about possible brain damage but right now only time will tell. They are going to move her out of icu and onto a regular floor. He also said they are going to stop her radiation and chemo for now but continue antibiotics. He said that right now she could go either way.

 

[smart2cook]

Praying for you and your mom!

 

[cookinfletch]

I'm so sorry you're having to go through this. Prayers coming your way!

 

[Sheila]

I'm so sorry either of you are having to go through this. Still hoping for the best. (((hugs)))

 

[otisbg]

Many prayers for you and also warm virtual hugs.

 

[ChefBeckyD]

Allison - praying for your Mom, and for you!

 

[Kisha1210]

Wow...I'm so sorry to hear about your Mom's sickness. I'm happy that you shared your story with us. Sometimes we need to reach out for our own mental health. Please keep us updated. Prayers going up for your Mom...and you *hugs*

 

[wadesgirl]

Talked to both her doctor and a neurologist today, they still really aren't sure. They know the pneumonia for sure. They still aren't sure about any brain damage but they are doing a MRI here in a few minutes. The neurologist thinks it's possible she had a stroke because she has very little movement on her left side. She did lift her right arm for us but is still not responding very much over all.

 

[pamperedlinda]

Hugs and prayers Allison!

 

[heather223]

I hope things get better for you! Hugs and thoughts coming your way.

 

[BethCooks4U]

Praying for you and your family. I know how hard this all is for you. {{{{{hugs}}}}}

 

[nikked]

Praying for you and your mom and the rest of your family...

 

[wadesgirl]

Good news and bad news today. She is responding to us and opening her eyes on her own without us talking to her. She still won't move anything if we tell her to but she'll actually look at us when we talk to her. Before she wouldn't even move her eyes. It appears she tries to communicate with us but cannot make that happen. She still mostly sleeps but a little while ago did open her eyes on her own without prompting.

Bad news - the MRI did show some brain damage like the doctors suspected. They still don't know the extent of it. He said that he's still optimistic for the fact that she has made some progress no matter how little it is. She still will not respond to pain on her left side but did respond very well on her right side and seemed to be grunting at him when he did this. He said it's possible for her to fully recover from this but it may take some time. She may have limited use on her right side and may have to do PT to help with that.

Thanks everyone for continue to pray! Please pray for my strength also. Pretty much it's just me here which I'm trying to not let upset me or make me mad. My stepmom has joined me for a little while both days which was nice the first day because I was all alone at that point. Her aunt has come to visit and a close friend of hers but as far as other family - NOBODY! Well my sister has an excuse because she's in the middle of no where in Canada and we haven't even been able to reach her. But none of her siblings have tried to come see her, none of my other siblings (one does live in Texas), or even her older grandchildren. Her dad is confined to a nursing home but I may try to break him out over the weekend so he can see her - still not sure on that, I was more worried if he needed to say goodbye or something but we aren't looking at that as an option any more. Her step dad hasn't tried to come see her either. Now most do live at least an hour away but still! I live an hour away and had things I need to do this weekend and still have to get ready for Chicago (still need to figure out how to get my hair taken care of before I leave!). Okay I'm done venting now... maybe for just a little bit.

 

[heather223]

Vent away! It is what we are here for. Glad she is making progress.

 

[wadesgirl]

She has now talked to us!! Earlier without expecting it or asking her anything she asked for (barely!) some water! When I repeated it back to her she said "Yup". Then the nurse came in and said Hi to her and although the voice didn't come out, she said hi back. Then right now I was talking to her and told her I loved her, she said it back to me!!

And when the nurse was suctioning the crap out of her mouth and throat she raised her left arm from her side towards her head. Now we don't know if it was voluntary or involuntary that has to be a good thing especially if she hasn't reacted to anything on her left side.

 

[ChefBeckyD]

She has now talked to us!! Earlier without expecting it or asking her anything she asked for (barely!) some water! When I repeated it back to her she said "Yup". Then the nurse came in and said Hi to her and although the voice didn't come out, she said hi back. Then right now I was talking to her and told her I loved her, she said it back to me!!

And when the nurse was suctioning the crap out of her mouth and throat she raised her left arm from her side towards her head. Now we don't know if it was voluntary or involuntary that has to be a good thing especially if she hasn't reacted to anything on her left side.

Wow! That's all kinds of good news! Continuing to pray....

 

[chefa]

Wonderful news! We're gonna believe it means good things for your Mom. Still praying for continued healing and progress for your Mom and for strength (mental & physical) for you too! Hang in there girlfriend!

 

[sherri lynn]

Hang in there sugar, thoughts and prayers going up for all of you involved.

 

[wadesgirl]

Mom is talking more today and while she still sleeps a lot is more awake than yesterday. She moved her right arm when asked and when asked where she was she said Iowa (close enough for me). The sad part was she didn't recognize who I was. She thought I was the doctor. I told her who I was and asked what my sister's name was. She couldn't remember that either. I asked who her sons where. She got one name right but the other name she gave me was my dad's name. She did say she was confused and didn't know what was going on. The neurologist still seems pleased with her progress. My sister is finally suppose to be home today. I've been calling every half hour since 7 this morning. Still no answer!

 

[scottcooks]

Sleeping is a byproduct of the bipolar. A caregiver (you or brother) needs to get her lithium or whatever meds to the docs on the case and hopefully get her levelled out. It's probably time for a medical power of attorney if she slept for so long.

Another thought I had looking this over, was install a video cam system so you can see what's going on. Could be one on the door of the bathroom, one on refrigerator, one on living room couch, one on her bed.

Rather than ask her questions, make a mantra - you are Donna, you have two daughters Mary and Grace, and you are married to Tom. You've been in the hospital and are getting better.

Start it with "you are" and end with something positive. People in a coma respond well to repeated mantras like this, as do folks with a brain injury.

I've had some experience with bipolar and brain injury folks in my life. You and your family are in my prayers.

 

[wadesgirl]

Sleeping is a byproduct of the bipolar. A caregiver (you or brother) needs to get her lithium or whatever meds to the docs on the case and hopefully get her levelled out. It's probably time for a medical power of attorney if she slept for so long.

Another thought I had looking this over, was install a video cam system so you can see what's going on. Could be one on the door of the bathroom, one on refrigerator, one on living room couch, one on her bed.

Rather than ask her questions, make a mantra - you are Donna, you have two daughters Mary and Grace, and you are married to Tom. You've been in the hospital and are getting better.

Start it with "you are" and end with something positive. People in a coma respond well to repeated mantras like this, as do folks with a brain injury.

I've had some experience with bipolar and brain injury folks in my life. You and your family are in my prayers.

She wasn't on any medication for her bipolar but her friend and I have been talking that we want her to check into that when this all clears up. She's mainly sleeping a lot for now due to the brain damage. It's the brains way of trying to heal itself. Sort of puts her to sleep so that it can work on healing itself.

 

[Sheila]

I've been out of town visiting my Grandmother who lives in the dark ages with no internet, so I'm just now catching up on all your updates for the weekend. Hopefully she'll start to recognize you soon as she improves more & more. Hang in there sweetie! I'm sorry that you are having to do this pretty much alone.

 

[wadesgirl]

A little more progress tonight! She gripped both hands when asked - very little on the left side but that's a really good thing. And she moved her feet. Very little but she did move both sides. At first I thought maybe I was just seeing things - you know hoping they would move - but she did! It's like watching a kid learn all new things it almost made me cry!

 

[Sheila]

Yea! I know that is a HUGE milestone for you!!!

 

[smart2cook]

Sounds terrific! If I may offer what worked for me - I just did everything "I" could because "I" wanted to. Whatever anyone else did or didn't do was something they had to live with and answer to someone else to (in my belief system) and it took way too much energy to waste any negative stuff on anyone when the person who needs me most, needs me to be positive and at my best. Yes it was and is difficult. I found prayer to help me a great deal. I also found taking care of myself, making sure I got enough rest, ate and trying to stay on a schedule helped me to stay focused. We cannot control the actions of our family members unfortunately (we know they were raised this way or that, wish they would help, some don't want to, some feel they have their own lives) but we can control our own thoughts and actions so I live my life on that basis. Your mom sounds like she is coming along fantastically. I will continue to pray for all of you and please take time to take care of yourself. Hugs to you.

 

[Jolie_Paradoxe]

I'm so happy to hear that she's made such improvement and that it looks like she's going to continue to make progress. Continuing my prayers for you and your momma. Smart2cook and Scottcooks gave great advice and I'm happy to see that there is some genuine support here for you.

 

[babywings76]

Allison, I'm so sorry to hear about everything that's been happening. I'm glad you are seeing some progress each day. You and your mom are in my prayers. How are you holding up? Do you have any other family there yet to see her?

 

[wadesgirl]

Got caught up with everything going on and conference so I thought I would update! The pneumonia has cleared up so they are moving her off the oncology floor. Mom is still bedridden and needs assistance even with little things like eating and moving around. They are going to move her to the Physical Therapy floor probably tomorrow and will start an intense 3 hour program every day.

Now onto the rest. We "met" with the chemo doctor today. I use the word "met" very lightly. He was the one who wanted to schedule a family meeting and picked the time after changing it once on us. He was 65 minutes late and literally stayed 3 minutes with us before saying he needed to get back! UGH! The social worker had pretty much told us everything that he had said within that 3 minutes. They want to restart the radiation but won't do the chemo because she won't be able to handle it. But we were talking tonight as a family and want to recheck into this. They want to do it 2 times a day but we are too worried that will wear mom down worse since she isn't "all there" yet. The PT nurse even told us if she cannot with stand the 3 hours of PT a day then they will have to move her sooner. Since we didn't get much time to actually talk to the doctor my sister is going to call back tomorrow and talk to him and the radiation doctor.

For now mom will be in the hospital 3-4 weeks longer while doing PT and then we will probably still have to find another program to put her in until we know exactly what the extent is (if she can go home or needs to be some where else).

 

[Dotty]

Praying for your family too!

My parents-in-law are both struggling with their own cancer problems so I have some idea of what you are going through. Check with the hospital and cancer center for a healthcare social worker or healthcare advocate (they have many different titles, but they usually fall under one of these two areas). This person knows all the ins and outs of the healthcare system and can help you find solutions to your care issues. Your doctor or nurse should be able to help you find this person. In fact, they usually contact you or the patient as soon as they are diagnosed.