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Mom Has UPSC - Just Need to Talk

jen36
Posts: 10
Joined: Apr 2012

Hi Everyone,

I've posted once about my mother. She was diagnosed about 5 months ago, and she will probably not make it much longer. It's really unbelievable how quickly things have progressed with her cancer. Unfortunately her cells are very chemo-resistant and she did not handle the chemo well. Well, she didn't handle the doxorubicin well at all. Honestly, it is what has caused her rapid decline.

She is in the hospital now due to a number of complications. We are now at the point where the only option is pallitave care. My sister and I are her only family around and are responsible for her care at this point. My mother has not really accepted her diagnosis. I think we were all very hopeful that she would be cured, mostly because my Mom has always been very afraid of life. She was always fearful that she would develop an illness. She was very unhappy with her life prior to diagnosis. Very regretful of her life.

So, now basically her biggest fear has actually happened and it's very hard for her to cope. She is extremely afraid of being alone, and I belive she suffered for many years from depression. Not creating a life for herself for so many years has created a situation that consists of her thinking day and night, while her body deteriorates, how many regrets she has about her life.

I could forsee this happening years ago, and I am now in a very tough position. I live out of state and am unemployed. So, I'm broke and have a toddler to take care of. I have come to the state where she is to be with her. But, it is extremely hard emotionally (because of how she sees life), financially, and in terms of me trying to maintain a life in my city.

Because of her fear of being alone, she expects only immediate family to be with her in the hospital night and day. I try to stay most of the day, every day, but that means that I have my small child with me...which is very hard to do. Mom cries when I leave, and tells me, could I please spend some time with her when I have a chance. I'm mad sometimes that she doesn't understand that I have to be there for my own child. I feel guilty for feeling that way, considering her condition.

She will be coming home (to my sister's house) in a couple of days. I'm happy for her to get out of the environment of the hospital and all, but now it creates even more stress especially for me. She really needs to be in a hospice facility. But, I know she would never allow us to put her in one. She is not trying to do anything for herself, although she is capable of doing many things. So, now I will be the main caregiver, pretty much 24 hours a day. I will definitely burn out. We will have hospice coming in for 3 or 4 hours a day, but I know that's not enough. She has a nephrostomy tube and a tube coming out of her stomach (to drain ascites fluid). She vomits everything that she eats, and no longer even says that she needs to have a bowel movement. So, it's going to be a lot of work. My sister is a doctor, which helps tremendously (with the medications and all), but it means she's very busy with work.

I just wanted to vent. I hope this post doesn't offend any members here. I hear so many wonderful stories of survival, and I am so happy and hopeful to all whom are affected by this condition.

debrajo's picture
debrajo
Posts: 791
Joined: Sep 2011

You and your whole family are in a very tough place on all levels, and I am so sorry for your mother. I have UPSC and even on a good day the fear is overwhelming. You know that Hospice is a multi-layer help organization...they can help YOU with what you are dealing with. My uncle is a Hospice volunteer(a lay-minister) and he and the other care-givers are always there for the family,too. Talk to them and have them talk to your mother...this disease is all-consuming even if you are not a dependent or fearful person. You need coping skills to deal with all of this and perhaps the Hospice people can talk you through some things. No one here is or will be offended by anything you say...we just want to help if we can and be here for each other at all times. Sometimes your family are the hardest people to help since you are so close. Wishing you and yours peace and comfort in the days to come. Best, debrajo

jen36
Posts: 10
Joined: Apr 2012

I am all for having hospice assist at this time. I seem to be the only one in the family who is interested though. My mother needs around the clock care at this point. My sister seems to think that I will be able to manage everything, bathing, cooking,feeding, medicine, tubes, adjusting her in bed (including my child) with hospice coming in 20 hours per week. Oh, and my sister is pregnant, so another reason most of this is on me. I'm not capable...period.

Hopefully when hospice comes next week I can speak with them about what assistance I will need, as well as my mother. I keep forgetting that I need some help coping with things also. I'm hoping hospice will be able to assess the situation, and tell us realistically if this proposed setup will work. I really don't want to be put in a situation where I'm not taking good care of my Mom because I'm too overwhelmed.

debrajo's picture
debrajo
Posts: 791
Joined: Sep 2011

If you want to get sick yourself, just try taking all this on yourself! Your mother needs more help that you can do alone and not just medical things. Let hospice do ALL they will do and tell your sister to either hire some one to come in at night or she can take care of your baby! My uncle talks sternly to some of the patients(not unkindly) about not taking advantage of their love ones. Sometimes a good talking-to by an athority person can make the patient relise what they are doing. There are other places, like skilled nursing homes for short-term patients that don't cost as much as Hospice settings. If you can get to talk to the head hospice worker and tell them you may not be able to do all of it, they may suggest a different way. Get some rest and hug your child..the most important person! Best, Debrajo

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

Before my own diagnosis, my father was diagnosed with brain cancer. I live in Texas, my parents in Seattle. I asked my employers for two unpaid days a month so I could spend a long weekend in Seattle each month (my dad was given less than a year) and they said no, so I joined the ranks of the unemployed.

I firmly believe that being a caregiver is harder than being a patient. Most caregivers don't ask for help, and keep all their emotions bottled up so as not to stress the patient. And caregivers put their needs aside to take care of the patient. And with your small child everything is magnified.

One of the best things I did for myself was find a Gilda's Club (I think they're now called Cancer Community Centers). There's no membership fee, and they have a friends and family support group. One thing they say is remember how the pilot says in case of emergency put your own oxygen mask on before helping others. If you don't take care of yourself you'll have a hard time caring for others!

Hospice is wonderful. They helped care for my father in-home - helping change sheets, administer meds and provide equipment, even having musicians come to the house to play for him. They were on-call 24/7 so there was always someone to turn to with questions.

My sister was less than helpful. She told me she couldn't spend time with my dad because 'quitting a job is easy but I have kids'. Ha. But remember you're only human and you can only do the best you can do.

My father too was a pessimist by nature (as is my mother) so the negativity was a challenge. The guilt trip is hard to deal with but remember that you can't change other people, only how you deal with them.

Hang in there, you're not alone.

Liz in Dallas

jen36
Posts: 10
Joined: Apr 2012

Well, my Mom is home. It's really hard already. It's about 2am. She's hallucinating a lot, talking to herself, and not sleeping. I am expected to care for her all night. I can see that I'm going to be very tired during the day. Hospice came in earlier in the evening. But, I will be asking for some additional help. I will burn out quickly like this.

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

I'm sorry to read what you're going thru...not that you don't already have your hands full with being unemployed, out of your state, plus a young child...then add to that your mom's health. Wow! Way too much for one to handle alone.

Do understand hospice can give step-in help for a few hours, but gosh almighty can't one get more help? I know when my father n law was in the hospital and we could see he wouldn't last much longer, they put him in a nursing home under palliative care side. Is this an option? We spoke with a social worker at the hospital who knew we couldn't handle him at his home with an ill wife nor home of his child (my husband). Forced to go to nursing home. His insurance covered most of it, but then again he only lived for another month at which time insurance covered. Past a certain period of time, the family would be paying.

I feel like there are other options, but then again you might have checked into them, not sure.

Wish you the best as you truly have your hands full....Life isn't fair at times, and all we can do is put one foot in front of the other and do our best.

Hugs,
Jan

Ro10's picture
Ro10
Posts: 1471
Joined: Jan 2009

I hope Hospice can offer ore support and get you Mom's medicine adjusted so you can all find peace and comfort. Take care of yourself, too. In peace and caring.

jen36
Posts: 10
Joined: Apr 2012

A hospice nurse came in yesterday at 5pm. My mom was in an uncomfortable position until she came, because I can't move her much without help. She complained all day, even hallucinated and asked people she was seeing to help her sit up in the bed. Horrible.

Anyway, I was told that this hospice company will come in for 1 hour every day. That is what supposedly medicare will pay for. Anything more than an hour is out of pocket. That's really not enough. I need to look into this myself.

It took three of us to move my mother from the old bed in the room to her hospital bed. We were exhausted. It's very hard adjusting her and cleaning her up after bowel movement. Her medicine and pain management seem to be under control though.

debrajo's picture
debrajo
Posts: 791
Joined: Sep 2011

Have you tried to get her on medicade, not medicare? This is the main one nursing homes draw off of for extra things. The two go together, one picks up where the other leaves off. My dau and dau n law are in their last year of BS/RN and a lot of their patients, especially my dau's are people who are not sick enough to stay in hospital, but too sick to be in a regular nursing home. It is a place for people that don't have much time, can't afford a hospice facility, but need more care than a nursing home. Don't know where you live, but in Austin and Houston are full of them. Also a practical nurse(PN) can be hired for as little as 8-10 dollars an hour. Start calling around at home health places...they are not as expensive as hospice workers. Hope you get some help soon...I am almost the same spot as you, but my mother 86 is crippled badly and step-dad is in the beginning of the last stage of Alzheimer's. It can over-whelm you in a heart-beat! Best, Debrajo

txtrisha55's picture
txtrisha55
Posts: 429
Joined: Apr 2011

I understand what you are going through. The guilt and the anguish for your Mother’s care and well-being, coupled with taking care of your child and your health.

Please take care of yourself and your child. Try and find a nursery home that will take your mom, if that does not work try to get someone to come in and help you. You are not super women and you must take care of yourself for your child. I know it is hard but your health and your child’s well-being is very important too. You will not be able to help your Mom if you get sick.

Back in Jan 1992, my Mom fell at home and could not get up. We (my Sister, me and my 6 yr old daughter) could not lift her. We called an ambulance, which took her to the hospital. They admitted her at one here in Dallas, TX. After a month of testing they recommended she be transferred to another hospital across town. The first day(mid Feb) there they tested her and found a sarcoma tumor on her leg which had spread to create a tumor on her spine which was growing around her L5 thru L7 nerves. That is why she could not walk and told her she was hurting all the time. She had radiation and chemo and was at this hospital till mid-April. The Drs said there was nothing else they could do. They did set up up with a nursing home so she was moved again back to our side of town to a nursing home. Hospice was not a choice for us to use because we thought it would get better, not really knowing that much about cancer at that time. By the time the nursery home recommended hospice to us and we had our first meeting with them to start the process, my Mom passed away before they could start. She lasted two more weeks and lost the fight 1 May 1992.

My Mom was the care taker for my daughter from birth till Jan 1992. My sister and I would pick her up from school, rush home, grab things then go to the hospital, then rush home to get some sleep, then go to work and get her to school and start it all over again. Sometimes, I or my sister would stay the night at the hospital and the other would take my daughter home for the night. It went on for months. My Mom had hallucinations too and in front on my daughter, that was not good. My daughter turned seven in second grade when this happened. She did not understand. When my Mom passed my daughter went through a deep depression and I had to put her in therapy.

So please take care of yourself and your child and find some help if you can. I will kepp you and your family in my prayers. trish

jen36
Posts: 10
Joined: Apr 2012

My mother died tonight, peacefully. I will miss her greatly. Thanks to all who listened when I needed to get things out. I appreciate this online community.

snowbird_11's picture
snowbird_11
Posts: 160
Joined: Oct 2011

I am sorry for your loss, Jen, but your mother is now a peace ... I am glad she went gently into the night. That all this progressed so quickly makes it difficult to process. My thoughts and prayers are with you and your family at this difficult time.
Annie

debrajo's picture
debrajo
Posts: 791
Joined: Sep 2011

Jen, you did the best you could in a terrible situation. I am sorry for your lost, but take comfort in the fact that you were a good daughter. Your mother went in peace, so be at peace yourself and get some rest, hug your baby, and remember your mother in the good times. Best, debrajo

HellieC's picture
HellieC
Posts: 456
Joined: Nov 2010

I am so sorry to learn of your loss Jen. But you must take comfort from the fact that your Mum went peacefully and you were there for her when she needed you most. Please do not dwell on any of the the difficulties of the past few weeks - you have been a model daughter. There are many who would not have been able to do what you have done, but you stepped up to the plate and were there for her. Your Mum would be proud. {{{hugs}}}

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

It's never easy to lose a parent, but please know you went above and beyond. If she could, I'm sure your mom would thank you

Liz

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

You did the very best for your mom and family. May she rest in peace and may you all find comfort in happy memories.

You are in my prayers, Mary Ann

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Sorry for you loss, but know she's at peace and in no pain.

Best to you and your family!
Jan

Ro10's picture
Ro10
Posts: 1471
Joined: Jan 2009

May you take comfort in knowing your Mom is at peace now and free of suffering. May you remember the good times with her. And treasure those. Take care of yourself. In peace and caring.

sunflash's picture
sunflash
Posts: 158
Joined: Aug 2011

So sorry, Jen, for what you've gone through. What a blessing you were for your mom! I'm glad she's not suffering anymore and is now at peace. Sending prayers and blessings for your family.

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