AnonymousFebruary 14, 2007 at 6:53 pm
My mother has been diagonosed with terminal osteocarcinoma. I have been there for her everyday after work and on my days off. These are ususally days I need to catch up on my rest. I have been backsliding soooooo very bad. Cramps, tingles, fatigue, well you just name it. What am I suoppose to do? I know she doesn’t have long to live but I am killing myself. This sounds so selfidsh so I will just be quiet. I don’t know what’s happening to me though. All my residuals are coming back. It really scares me and she can tell it too. Some help please……… xoxoxoxoxoxx Roxie
AnonymousFebruary 14, 2007 at 7:17 pm
I’m so sorry to hear about your mother. That is such a difficult thing to handle.
As far as how to manage caring for her, I may not be the best one to give advice, because I can only speak for my own priorities. My feeling is that with something like the imminent death of a parent, you only get one chance to do it right. To me it is worth whatever pain, inconvenience or fatigue that I may be having, to try to help my loved one have as easy a passing as is possible.
That said, is there any way you can make it easier to be there for your mother and for yourself? Perhaps you could arrange to sleep over at the hospital or her house, instead of commuting there. Can you take naps and rest whenever she does?
Can you turn any of the physical caregiving over to others (friends, family, visiting nurse, hospice etc.)? Make lists of daily things for them to do, so you won’t have to wear yourself out. This might enable you to focus on your mother’s emotional well being. Just having you there to talk to would probably be a great comfort to her.
Does the company you work for have compassionate leave available?
My own mother was in the hospital recently, and I felt that it was important for me or my brothers to be there with her most of the time, because we were not confident of the care she was getting. I was exhausted all of the time, and my residuals were flaring up, but I chose to hide that from my mother. I didn’t want to give her more to worry about (as good mothers always worry about the health and comfort of their children).
She’s home now and recovering, but I’m glad I was able to be there for her. It took me two weeks to get enough rest afterwards and for the pain to dampen down, but it was worth it.
You’ll probably get advice against this approach, and of course, you need to do what you feel you can look back on later without regret.
I’ll keep you and your mother in my prayers.
AnonymousFebruary 14, 2007 at 8:47 pm
Roxie-Suzanne had a very profound statement…you only get one chance to do it right. What you are going through is very stressful and you need to make sure that you have no regrets with regard to your Mom. I can only say that I went through what you are doing– last August and I hope that you get the same support we had from the place Mom was staying (it was a senior’s home with full care).
Not knowing ‘when’ is difficult but please make sure that your Mom knows how much you love her and if it isn’t painful for her she might enjoy a foot massage, or lotion on her dry skin for example. Your Mom likely sleeps a lot…don’t be afraid to nap too. And when that time comes, if you are fortunate enough to be there when she draws her last breath please tell her that you love her and to say hello to the others she is going to greet. Let her know that she gave you a happy childhood…..and talk to her for several minutes after she leaves. Hearing is the last sense to go.
None of that helps your residuals, but you said it yourself “my residuals are coming back”–that is just what they are..residuals. Remember, you were sick with GBS, you now have aftershocks and that is most likely all it is.
Wishing you all the best….I know that if you have no regrets about your Mom then you can handle it. And you will be strong enough to get through it.
You will grieve later, plenty, from time to time but you will have been there for your Mom.
May you find the strength you need.
AnonymousFebruary 14, 2007 at 11:37 pm
roxie. my dad had broncagenic carcinoma (sp?) when i was battling my gbs. my mother and husband worked and i had to be there for my dad. he had four cancers in five years and passed away two weeks before i had to start chemotherapy myself. i didn’t think i could do it without him, but somehow i did. i think his spirit got me through it. i am an only child and i was daddy’s little girl, even though i’m 45. it was hard on me with the fatigue, walking with a cane/wheelchair, pain, numbness, tingling, etc. however, i somehow managed to drive him EVERYDAY to center city philadelphia for his radiation treatments and chemo. every monday. i can honestly say, now that he has passed; there isn’t anything i should’ve done or said to him before he left this earth. he truly knew how much i loved him and i truly knew how he loved me. guilt free. trust me, your mother will understamd your suffering as you understand hers. you are in my prayers my dear. i feel your pain.
with much love,
AnonymousFebruary 15, 2007 at 9:00 am
Do you have a Hospice organization in your area? Those people are wonderful. No, they are true angels. explain to them what you need, and they will help you. Remember too, that the Lord won’t give you more than you can hanlde. Just ask for help. Blessings on you at this time. Many of us have been in that position. You won’t regret doing more than you think you are able.
We are here for you.
AnonymousFebruary 15, 2007 at 2:27 pm
I am very sorry to hear about your Mom. You are not being selfish in wanting to have some quiet time for yourself. You are under so much stress right now and could really use some help from anyone who can take over for you when you need to rest. Like Victoria said maybe a hospice would be an answer.
When Frank was first diagnosed with GBS and still in the hospital, my Mom was in a hospital in Florida dying and he told me to go be with her, glad I did because she passed away 2 days later. But my stress levels were so high that I had a mini breakdown and that affected Frank because he was so worried about me having to take care of him and he didn’t want to add to my stress, plus I was working full time.I quit my job a few months into Frank’s illness which was the best thing I could have done for him. No regrets though and I would do it all over again.
But you have to do what you think is best for you and if that means being with Mom then do it so you don’t have any regrets. But if you think you health is going to back slide maybe you will have to think about yourself first. That is not being selfish at all. Your Mom knows you love her.
I will be sending big hugs and many prayers your way sweetie. Please take care of yourself Roxie, you know I care about you.
AnonymousFebruary 15, 2007 at 3:13 pm
I am so sorry about your mother. I haven’t been in the situation you are in now, and as Donna said, everyone has to do what they think is best, but I just want to say that, whatever decision you make, don’t feel guilty. The most important thing is that you love your mother and you take care of her the best way you can. Maybe it means taking some rest and get some help, like others suggested.
My father has been going through a very difficult time in the past months, and I wanted to be there for him so much, just like he has been there for me too in the past. But at some point I was so extremely tired and in pain. I literally couldn’t speak anymore, I couldn’t hold him, I couldn’t concentrate on what he was saying. It was very hard, but I had to decide to take a step back, and take some rest for a few days. When I told him I hated myself, but he understood. It didn’t mean I couldn’t be there for him anymore though, although it felt like it at first. Actually, I could be more supportive because I had rested.
I don’t know what I would do in your situation. I can imagine that when your mother is dying, you want to be with her as much as you can, so that makes it different from my story. All I want to say is, maybe taking care of yourself is the best way to be able to be there for your mother.
AnonymousFebruary 15, 2007 at 5:01 pm
This is a hard one. Today, Feb. 15, is the one year anniversary of my father’s death. I found myself going through what is happening to you. I got extra sick with colds and anything. So, I started having to divide my time between work, my father and myself. I knew my father would not have wanted me to jeopardize my job so that part of the decision was fairly easy – I had to do work.
It was getting obvious that my father would not live and my family (siblings) did talk to a hospice person and was about to get that started. I would recommend going along that avenue for some help for your mother and YOU.
I was fortunate to have 4 siblings that were there at the hospital all different times of the day. I would go after work but only for 1 hour and home to crash. I then started taking a day off from going to the hospital. We were all getting worn… this is hard to try to share with you as it is so long and so emotional.
To sum it up, please do take care of yourself – I feel strongly my father would not have wanted me to go so sick I couldn’t take care of myself. I do not regret anything and miss him dearly.
Oh Roxie, dear, hang in there. Share with us lots and have a bunch of good cries. Life just totally sucks sometimes, but my faith comes through that we are here for a reason.
I’ll be watching for your posts.
AnonymousFebruary 15, 2007 at 6:17 pm
I went through it when my husband was dying from lung cancer a long time ago. He was diagnosed as terminal in October and died in early January. I took care of him during the times he could be home. I remember thinking when I was near exaustion “God, I need help too” and that’s not being selfish. I wasn’t dealing with a syndrome then though. Lean on friends and family as much as you can so that you can get some rest. Mom’s LOVE us and your’s will understand that you have to leave her bedside to rest. Don’t feel guilty, her sickness might say “don’t leave me”, but a mom’s heart will understand you need to rest. Maybe if an extra bed could be brought in for you you could rest too. Do tell her nurses what you struggle with.
From my heart, close your eyes and feel the hug I send,
AnonymousFebruary 19, 2007 at 6:31 pm
Thank you all for your insight. I am almost worried more about my mom seeing my fatigue, no matter how I try to hide it. She gets so worried about me ,and I swear, I think she should be thinking about herself, but maybe it just might feel good to her to comfort me a bit. It’s kinda hard to hide it all the time, you know, especially when you are slurring your words and walking with a limp. About my support group, HA, HA. The people at work think I’m just fine, and it’s all in my head or something. The Doctor’s have written notes to put me on lighter duty for over 5 years now but they always seem to give me the hardest assignment. I almost think they want me out of there. Like they are testing me. It drives me crazy because as you know, if only they could walk in your shoes. It is so depressing, but I try so hard to over come them at least. My best friends understand, but are on totally opposite shifts then me . In all, nobady gives a darn, as long as the work gets done. I was thinking today about how maybe I could get disability again, to just work P/T. That is what I really need. I am blessed, however that my mom has no pain. I am so greatful for this. I really can’t even talk about her at work because thy are so selfish. They are like…. OK so your mom is dying….Just work and don’t call in. It makes me ill. It’s almost like they don’t beleive me againh. HURTS!!!!!! She has lost 80 lbs in 2 and 1/2 months and is on her way out. Is all they care about it seems is getting the job done. I feel as if I’m dying myself. Do they really know how hard it is for me to work full time and take care of my mother. If I don’t see her for a day, and it’s only been once, she is so scared. She just wants me around, you know. I am getting upset so I will say good bye for now. Thank you guys so much again. You are, and always will be my second family. xoxoxoxoxo Roxie
AnonymousFebruary 19, 2007 at 7:20 pm
Roxie, Just read your last post with lots of tears and believe me, I do know what your are feeling. Today marks 1 year that my dad passed on.
Once he was diagnosed with cancer, I went into overdrive; first I believed I could fix it, then I believed I could make him comfortable, and finally I wanted him to go in peace. I am grateful for those 6 months our family had to say things that wouldn’t have been said and bond in a way we wouldn’t have bonded. I miss my dad every day, but talk to him nearly as often.
Wish I could reach out and give you a hug. So much to say…I completely understand your exhaustion and your mother’s need to have you there. I’ll keep you in my prayers. Know that you must take care of yourself in order to have quality time with your mom now. It’s so hard to manage.
My faith became stronger as dad and I talked about what was coming. I don’t know how people can get by without the belief that they will truly be better off. That’s how I know I can talk to my dad and he has often given my little signs that he’s up there looking down.
Have you contacted your local Hospice. They are an amazing group. It really helps.
Thinking of you and your mom,
AnonymousFebruary 19, 2007 at 10:35 pm
My heart goes out to you, just knowing what you are going through, and all that you are facing. Adding your own illness, and the unfeeling attitude of others makes it so much harder.
Several years ago, when my father was ill and dying with cancer, I happened to be doing a project for a very difficult and uncaring client (thankfully, one of the few that I’ve ever had like that). It made the situation doubly hard because, as you said about your coworkers, this client knew, but couldn’t have cared less, about what my family and I were going through- they just wanted my 100% attention.
Even though the project was going smoothly, that client constantly found reasons to summon me out for meetings, and I spent hours on useless phone calls etc. They even called me at the hospice, where I was staying with my father during his last days, to ask questions that could easily have waited until later. I managed to continue to act in a professional manner, and still defer the questions till later, but they caused me needless additional stress.
I learned how to prioritize from that experience. I knew I would never look back and say that I wish I had been more responsive to the client, but I surely would have always regretted it, had I not done all I could do to be with my father.
I put all except the essential things for running my business on hold, and concentrated on being with my father as much as I could. I moved back into my childhood bedroom at my parents’ home for awhile, to help my mother and brothers with his care, while my dear husband took care of things at our own home.
At the time, I was still recovering from major surgery, and not quite well myself, but I put up a brave front for my father. I didn’t want to burden him with worrying about me, on top of his own illness. Somehow, with the help of God and family, I found the strength to stay with him night and day for the last days of his life, and held his hand as he passed away peacefully in his sleep.
It makes me cry as I write this, because I still miss him so very much, but it gives me a great deal of comfort to know that I was able to be there for him, when he had always been there for me throughout my own life. It helped to carry me through the early, raw days of grief, and still comforts me today.
I wish you the same comfort, and urge you to take care of whatever is most important to you.
I agree with JayDee about hospice. They were such a wondeful resource and help for us during that very difficult time.
May God bless you, and give you the strength to do whatever you need to do.
AnonymousFebruary 20, 2007 at 1:58 pm
In my own case I was called up to my mother’s home in December because her medical professionals said she was dying. She was then discharged from a nursing facility to her own home as she requested. Once I was there, her primary nurse-practioner asked me if I wanted to contact a hospice organization and I of course agreed as I needed badly needed help. The hospice organization was extremly helpful in providing nursing, medications, and home health aides (paid for by her medicare related health program) as well as free volunteers to sit with her, do shopping, fix meals,etc. Neighbors also provided some help. She is still receiving help even though her condition has stablized somewhat. Of course I’m not sure if my experience fits your situation.
[QUOTE=Roxie]My mother has been diagonosed with terminal osteocarcinoma. I have been there for her everyday after work and on my days off. These are ususally days I need to catch up on my rest. I have been backsliding soooooo very bad. Cramps, tingles, fatigue, well you just name it. What am I suoppose to do? I know she doesn’t have long to live but I am killing myself. This sounds so selfidsh so I will just be quiet. I don’t know what’s happening to me though. All my residuals are coming back. It really scares me and she can tell it too. Some help please……… xoxoxoxoxoxx Roxie[/QUOTE]
AnonymousFebruary 20, 2007 at 4:19 pm
I know this is crazy bur hospic won’t come in until she is feeling pain or uncomfortable. Comfort measures only. As I said, she’ s blessed to have none, so the doc’s don’t see that as an option now. Kinda bitter sweet. I have to go away to pick up my son on Frid. and my sister is coming Saturday to stay with her , however, my mom she just started crying, sayin how much she’d miss me. It made me feel freal bad. I know iIcan do things my sisters can’t and likewise. They are so into trying to make her well, which will never happen, and she doesn’t want anyone to come into her house. I know I wouldn’t either if I were her. Only hopsice if she has to get that far. My sis wants to hire someone to help me but I said no. Mom doesn’t want that. She is happy if I can only stay there for an hour. Her happiness is all I want.I know I am there all the time, so they don’t quite understand everything. They mean well, but I I still don’t think they get it. It is terminal and she wants things her way and so do I. I know they love her but just let her be. She has excepted things and I believe she is at peace. Who knows, Maybe I’m wrong but I deal with dying people every day of the week. I know your prayers count and I thank each and every one of you. You have always been my second family. xoxoxoxoxoxoxoxo Roxie
AnonymousFebruary 20, 2007 at 10:07 pm
I had Hospice come because my mom stopped eating and getting weaker and weaker. She was not in pain or uncomfortable and they accepted her into the program. Seven hours later she had a major stroke. I called Hospice and they said it would take 45 minutes for them to get there. She was in the bathroom. I could not move her as she was paralyzed on her right side. They told me NOT to call the hospital – she would come and put her back in bed. Thank God I did not listen. I called the ambulance and she went into a coma an hour later and died the next day. But had I listened to Hospice, it would have been a nightmare. I signed up for Hospice so they would know the irght thing to do, they didn’t. Just be careful. Then they wouldn’t come to the hospital even though my doctor called them and said, “This woman is all alone.” Hospice hadn’t signed a contract with that particular hospital – which was right across the street. WIsh they would have told me that. THen they delivered a shower chair for my mom even though she had hours to live. W:p Hen they knocked on the door, it scared my cockateil and he died in my arms that night – the night before she died. I know Hospice can be good, but not in my case. So maybe if you tell them that they were going to come in Tampa, Florida…they will come to be there for your mom.
A friend of 40 years had a mom in a nursing home that she visited on week-ends. The night her mom was dying, she begged my friend to come and be with her. My friend said she couldn’t. When I told her she should go, she said she didn’t want to be there when it happened!! It was only 15 minutes away. I did not judge her for doing this but I should have. WHen I got GBS she wouldn’t come to help me even though she lived 5 minutes away. I should have known that someone who couldn’t be there when her mom was dying ( the ultimate sacrifice in life) then she wouldn’t be there for me. She admitted that she was the “worst friend in the world, but couldn’t help NOW.” I am not angry…..but she is no longer a friend and IF she ever needs me, I won’t be there. Sometimes people need to know experience first hand what they did to others.
Roxie, my mom got arthritis and fluid around her heart/lungs when I had GBS the first time. It went away when I got better. Maybe your mom wants to take care of you too. Do you think you could take a nap when you visit her? WHen I took my mom to the ER, I would hop onto the bed with her to be silly and take her mom off of her being there. Do you think you could take a nap with her after work? Hold onto her like two spoons – and you could talk and bond and perhaps fall asleep?? Just an idea…….
AnonymousFebruary 21, 2007 at 6:26 pm
Funny you mentioned your friend. My freinds thought I was dying during my acute phase and wouldn’t see me for a really long time. Maybe they just can’t deal with death or something. I didn’t know but everyone, it seemed was so afraid to visit me. I shut myself out and became really depressed. I am, for that matter, still depressed, because in a way, I have not excepted my life the way it is now, compared to the way it was.. I still want to be super mom, super everything… If you only knew how much energy I had. People couldn’t even figure out how I did what I did, but it was the running 7 miles/day and riding my bike. I can’t do that now. Not even close. I wish I could find some other way to vent. Maybe someday. I’ve tried almost everyting from yoga (CAN”T DO) to meditating, oh hell., I’ve tried it all. Maybe I’ll get a sign>>>LOL Good luck with your endeavours. xoxoxoxoxoxo Roxie
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