Caretakers of cp

Pancreatitis
#1

I’d like to pick the brains and hearts of those who have a loved one with cp. I know each person and situation is unique, yet I’d like to try and get some idea… try and step into anothers shoes. I’ve tried to understand my family and their reactions, yet I have difficulty. Maybe there is something I haven’t taken into account or overlooked.

Thank the heavens I am better than I was, but I still fear it is only temporary. I am absolutely terrified of returing to the way my life was before. I had my own apt which was nice in a lot of ways. I could have things how I wanted and be surrounded by my own things. But days and days would go by and not one person to talk to. I know it is morbid, but I wondered how long it would take for someone to realize it if I died. Then again, things were not much better when I would come to my parents house. I would be put in the bedroom with the door shut and felt just as lonely. There were times I would get up and go out to find everyone gone. I felt very forgotten and disregarded.

I know everyone is busy and they have their own lives. This only makes me feel like even more of a burden. Am I that much of an inconvenience? If your own family can’t stand to be around you or help you how can anyone else be expected to? I know how hard it must be to see someone you care about suffer. But as hard as it is for them to see me hurting it is even harder to be the one stuck with the suffering. They had the option of walking away and forgetting for a bit. I didn’t have that option. I fear I will get sick again like that. I don’t think I can go through that again, especially alone. My family has made it fairly clear they are tired of me being sick.

I just thought I’d try to get some insight.

Thanks and painfree to you and yours

#2

First off, I don’t think of myself as a caregiver but instead just a boyfriend of somebody with CP who I love. I am here to learn more about what she is going through so in effect I am stepping into her shoes to learn more so I understand your desire to learn more on the caregiver side.

I never consider it a burden or anything close to that in all my support for her which think has not been much at all. I know she is a very independent woman and has the most wonderful spirit which I love. She knows that I will be there for her when she needs any support without any hesitation and it is never ever an inconvenience when she needs that support no matter what the time or day it is even if it is just to talk. I am very willing to give her all the support she wants which she knows and appreciates. What makes it easy for me to be this way is that I love her and that from our talks and what I’ve learned from this board has given me insight into what she is going through as she deals with the CP. This understanding to me, is the key to dealing with things. I also have a view of the CP as it is just another thing in life we must deal with and it isn’t going to stop her from living her life.

As far your family goes, it can be very frustrating for them to see you suffer with what you are going through. My question for you is how much do they understand of what you are going through? How much do they understand of the CP? I know my girlfriend and I have discussed a lot of the various issues and with our ability to communicate are able to discuss things which makes it much easier on the both of us. So in essence, what makes it easy on me besides our love for each other is our communication and my small understanding of what she is going through that will never make the CP a burden.

#3

Karas-matic,

It is very difficult for others to understand what is going on. They just don’t get it. But on the other hand I know that in the past I have been a little oblivious to the pain of others also. I think it is scary for others, no one knows what to do for you or even what to ask. I just tell my family that there really isn’t much they can do for me because there really isn’t. They have begun to realize that I can’t eat tlike they do or what they do. I know my husband and kids worry about me. My kids are adults with families of their own. They don’t have to deal with me on a day to day basis. My husband believes that I will get better and things will get back to normal. We are Christians and believe that God can heal us totally if that is His will. But I also believe that God can take an illness and use it to help us to be more compassionate to those that also suffer. I have also felt that He might want to use me in a way to help educate others about chronic illnesses. I’m not sure what that looks like now though. Just know that I will be praying for you and your family’s understanding of you illness. A prayer that all of us could probably use to some degree.

Lord, You know the hearts and minds of all your children. Would you help all of us to be more compassionate, as You are, more understanding, as You are, more loving, as You are. Would you give us the knowledge and wisdom to be compassionate toward those who love us and don’t understand. Give us an extra helping of insight into their thoughts and feelings. And Lord, when we feel misunderstood, rejected or unloved, I pray that we would remember that You are always there to hear us. So Lord, in those down times I pray that we would just be able to sit on Your lap and let You be our Comforter. For our families we also pray these things. Thank You Lord. Amen

Keep the Faith and God Bless,
Vonnie

#4

Hi dear friend,

I went through all this asking lot of questions about family. Family means aren’t we supposed to help each other or support each other when someone is in need of help. When I asked my sister to come and help me before my tough situation started when I was pregnant. She said, happily of course I’ll come. But then when I had the baby then my situation deteriorated and the doctors were talking about there is a chance of having a surgery. So, I called her and said, this is what’s happening can you please come? I never expected that kind of answer from her. I baby sat her kids, my brother’s kids because I was the youngest in the family and loved kids. In India we just help each other never ask for baby sitting money or something like that. She said, ‘Why are you staying with so many problems there? We have everything here, tell the doctors that nobody can come from India so take some pain medication and come here we’ll try to help you all of us together. Why are you stuck there? Can’t you move from there? You are staying there for the sake of earning more money, then you can’t think about anything. Do you know how much stress you are giving to all of us here? You are very selfish? I’m not going to come. If something happens( if I die) I can’t handle all alone. Here everyone will be here and we can share everything.’ I couldn’t listen to her anymore. I came home after the hospitalization. The way she blamed everything on me and try to convince her not coming she did that. I told her I’m not in a position of traveling. You know what she said, ‘It is such an advanced country can’t they give some good pain medication so that you can fly here. How can we move from here, I never moved from my house and you are asking me to come there.’ But you said, you’ll come, why everything changed. My brother-in-law made her realized that how selfish I was. When she first said, she will come he was on tour. She never can think by herself and take decisions. When she said, what if something happens,I couldn’t even say we are trying so hard that ‘if something’ not to happen. I was in the hospital next day and I called her from the hospital and said everything that was eating in my mind. My mother was there and she started crying. I asked my sister or sister-in-law because they are young without any health problems they can help me better than my mom. My mom has lot of health problems and I don’t know whether she can tolerate the flight journey.

But after my puestow procedure as soon as the winter ended, (she can’t take too much cold here as she was an asthma patient) she told my brother and brother-in-law that she wants to go and help me so help her to get passport and Visa. They did help and we have sent money from here. I was so amazed the way she came all alone, she had company of a couple but they weren’t much help to her, and was so happy to see us the minute she came here. I felt so happy because I started losing faith in the family and was thinking it’s all hypocrisy. She was here for 6 months and tried her best to help and the baby loved here and got so much attached to her. They again came including my father and father-in-law because I was not yet ready to go and my dad who was 84 yrs old started worrying about whether he’ll get to see me or not. One yr. the Consulate rejected Visas for them. We were very depressed. After one year they got Visas and came here and stayed for 6 months. For the 1st month everything was fine. Then started the trouble my father and father-in-law couldn’t accept that I’m not able to eat and said, it hurts them more. Then I said, I know I can understand your point of view but what about me? Am I not the one who got stuck with this problem and suffering. Isn’t their duty to give me encouragement and try to have fun with the kids as long as they were here? WE had both good and bad experiences with them in those 6 months. But it was mostly me trying to hide my suffering in front of them, or trying to prove that I’m ok by showing my bead work and used to say, see how strong I am, when I’m not worried about this thing why are you worrying. I know parents are parents they don’t want their kids to see as sick people. After a while I quit playing hide and seek with them. I let them see how I’m suffering and at the same time how I’m struggling to survive and raise my kids etc.

My father-in-law has diabetes and he is just 60yrs old and I agree he has been through two loses in his life within few years. But even though we are far away we tried support him as much as possible. He was able to walk without any problem, eat ok taking half a tablet for diabetes, sleep ok because I use to hear his snoring. How about me? I am not eating anything, I’m on feeding tube, can’t walk properly as I take shots in my back and also in my thighs when I get attacks. The legs became very sore and my legs became stiff and can’t walk properly and I use wheel chair and I’m very young when compared to them. My mother was trying to explain to them but they were not seeing from my point of view. But it was ok. My kids get to see good and bad things a family goes through and that’s all part of being a family. I told them we are going to remember going to Niagara Falls with them and having so much fun and going to see other places, grandma making fun eating stuff and all of us sitting and playing all kinds of games together, celebrating festivals, birthdays etc.

My main concern about going is to face my sister and brother who refused to come and help me. And how I used to help them when they used to leave their kids and go to watch movies or somewhere. Did they forget about all the help? When I talked to my friend in India to let out my feelings, I think she couldn’t take what my family did to me. She called and said, somebody needs to go but they tried to tell her their point of view story to her and asked her to send email saying,’ you get lot of baby sitters there if you pay money. Why does she need us?’ I wish I could have asked them money when I baby sat their babies and make bottles in the middle of the night because I used to sit and study at night time and my sister used to get upset if the baby gets up in the middle of the night.

My therapist try to reduce my anxiety thinking about my family telling that all the chronic families go through these kind of problems. As they love you and don’t want to see you suffer and do not want to think what’s going to happen the best thing they can do is just move themselves from the picture. I used to say how about me. I’m all alone here and going all kinds of problems I never heard and had to accept all these things and make myself brave because I had a dream of spending happy time with my little girl and see my son what he is going to become because he is very smart, intelligent and very compassionate person. He has so many talents.

My friends became my family here. They understood that we don’t have much help so they did everything they can to get through the tough time. They became my strength and moral support. My immediate family became my inspiration to continue the struggle no matter what happens I’m going to be there for my kids and for my husband who does so much for us. I always tried to support my brother whenever he needed support when he had trouble with my father. My father used to get mad but I stood by him.

So, I think everyone goes through unless the family members are very compassionate and want to be there for their kids. Please don’t think you don’t have anyone to talk. I’m here for you darling. I can totally understand what you are going through but we are going to support each other. I’m happy that my kids are watching so many friends help us and we treat them as family members. Families means not only blood related in the
changing world. That’s what I learned with my experiences. My father was so surprised to see all my friends coming and taking me to the doctors, a friend come and take my mom and me out so that we’ll get a break from the men who complain all the time.
Last week show was a disaster for me but I met a good person who is from Zambia and we talked so many things and exchanged ph,nos, emails and promised to each other that we are going to keep in touch. When my husband came to pick me up he said to him that he is a strong person and he admires his strength. Then he added without your support he is nothing, he is doing all this because your will and moral strength.

So, whenever I make a new freind I think that we added a new member to our family. And our kids love this extended family which has people from different countries, color and languages etc. They are learning so much from this extended family of ours.

*Please don’t think you don’t have anyone to talk. I’m here for you darling. * I can totally understand what you are going through but we are going to support each other. *AS I’m learning so many things from my friends how to love unconditionally and be there no matter what happens, I want to share this experience with my new friends. **I don’t want you to consider yourself as alone anymore at least as long as I’m your friend. * When I was reading your note the tears running down made it hard to read.

I LOVE YOU DEAR FRIEND AND WE ARE IN THIS TOGETHER. THE DISTANCE DOESN’T COME IN BETWEEN US AS OUR FRIENDSHIP GROWS. YOU’LL
FIND OUT THIS SOON DARLING!

Saddest thing is every human being has so much love in them but they won’t know that they have in them and doesn’t know to share with the people whom they love or with the other people who are in need of love.

Lots of love and many hugs,
Durga.

#5

Kara,

I know EXACTLY how you feel. I live with my partner and son. They are gone all day. I am getting in-home care in a week or so for 4 hours a day up to 83.9 hours a month. Do you need such help? It will not hurt to ask for it as it is from Medi-Cal.

Even though I live with my family, I really feel so left out of all things as I can’t leave our bedroom due to being bedridden. Whatever happens n the rest of the house can happen in Russia for all I know. It is a lonely feeling as it seems that I am sort of ignored in my own home by my own family. On top of that, my mother and two brothers who live in Sacramento as I do don’t even come over to see me as many as 1 time a year unless I am in hospital because that’s when they think that I am really sick. It is very frustrating. Being among the people you love and care for and yet so invisible to them at the same time.

Thank goodness for the internet, phone, TV, iPod, and books or I would be totally whako now!

Anyse

#6

I’m very sensative to being a burden on people. It seems I’ve had so many people come through my life. They are ok at first but when the illness just pursists endlessly it gets to be too much. So while I am grateful that they put aside their own lives to help me, I can’t help but feel I am what drove them away.
It is almost like the stuttering person. You meet them and think “I can help them not stutter”. but then when the person realizes they can’t make the stuttering stop, it even get worse, they leave. I feel like some blame me for not getting better.

I’m so scared because even though I am relatively “ok” right now, it is only a matter of time. I’m terrified of going back to what I had.

#7

You should never consider yourself a burden on people, you are who you are and they need to accept you as you with all life’s complications that you are dealing with. I know with my girlfriend, I say I accept her warts and all which is something I learned from my mom. There are so many things about my girlfriend to love and cherish that the CP and other issues to me are just something to deal with. I know it can be difficult for other people to understand what you are going through but it is their lack of understanding that makes them do what they do. So don’t place any blame on yourself for them leaving, it is just something they can not deal with. {{{{HUGS}}}} I feel very lucky to have found a woman like my girlfriend. I know she’s called me a keeper but to me, she’s the keeper.

#8

I am a care giver (mother and wife), I have also experienced chronic pain and have been friends with those who struggle with chronic pain. Most people truly do not understand the difficulty of living with chronic pain - especially if it is ‘invisible’ and long term. One reason is that it is hard to watch people you love suffer - you want to be able to do something but you are helpless. I just found a great book for my daughter - I think it is titled ‘One Day’ - it talks about a caregiver wishing that she for one day could take the pain away. Everytime I watch my daughter go through her struggles I wish I could be the one. Another reason I believe is that we somehow want to make the person ‘feel’ better with our words and actions and we may feel a bit frustrated when our words and actions can’t change things. Another is that quite honestly it does take a toll (this is sad but human). It is such a depressing feeling that you can’t do anything - that while you want to say or do something to make it all better it won’t happen. Than maybe there is resentment that I feel down because so and so feels down and so I don’t want to be around that person. I think in these cases it is so good to have sites like these or support groups so families or caregivers know how to take care of them. If caregivers don’t take care of themselves they get burnt and can get pulled in to depression. It is such a hard balance and like you said every situation is different. For me it has been so helpful to learn about hp - I don’t have it myself so I can never really understand the pain my husband and kids go through - but I try to learn about it and what I can do - what works for them and I am learning to take breaks when I need to so I don’t go crazy. I do feel so blessed for my family and do wish I could take their pain away - I would do it for a lifetime - not just a day if I could.

#13

Hi Ellbell,

Yes, the caretakers or caregivers deserves so much. Yes, the people whom you love and care about you when they are suffering you don’t want to see the agony, pain they are having.

It is hard for anyone to go through that situation. I’m a patient but when my kids get something seasonal viral fever, colds, stomach aches etc. which we know that they 'll get better and it’s just some bug that they have and they’re going to be fine. But still when they don’t eat well, don’t want to take their medications, can’t sleep well I just pray to god just take their suffering away. And I do everything I can do sometimes neglecting myself as they need total attention. Once they get better I get sick but I don’t care as I always get sick… *If I worry just over simple things that come and go away I can well imagine how hard it can be for taking care of the kids who have Chronic conditions. *

I think the people who take care of the Chronic Patients deserve breaks, pampering and special treatment at least sometimes so that they can relax, recharge and again get ready to take care of the loved ones.*For me these people are the Super moms, dads etc not those who take care of the normal kids and normal people. They put their heart and soul into what they are doing and wishing they can take their pain away, to see them smiling, or doing normal stuff just like other kids. *

I watch my husband and sometimes my children going through the same situation. Whenever I’m in pain they just become quiet and all their attention will be around me whether I’m sleeping well or not, did the pain medicine work or whether I’m comfortable or not etc. I can see helplessness in my husband’s eyes and he just gets frustrated sometimes for not able to help me any way to take the pain away. He gives me pain shots and just waits that painful look on my face to get relax soon or if it doesn’t after a gap of sometime I need to take another shot and if that doesn’t work he really gets very frustrated and sometimes just wait no matter how much time it takes he will be around in case we need to go to ER. He doesn’t eat sometimes and I saw many times whenever I ended up in the hospitals waiting until early morning like 3am. Sometimes we have wait to get rooms to get admitted until next morning. He’ll just wait as long as he can and I have to make him go home to be with kids who on the other kind must be so scared. These are just few examples and there are so many things he does taking full responsibility, being so patient, loving, sometimes losing their patience which is ok for god’s sake because they are just human beings, and in spite of all the stress they try to keep the balance.

CARETAKERS ARE SUPER MOMS, DADS OR HUSBANDS WHO TAKE CARE OF THE SICK PEOPLE LIKE US. THEY DESERVE TOTAL RESPECT, UNDERSTANDING AND LOTS OF LOVE FROM FAMILY AND FRIENDS! *If they don’t take care of themselves properly they won’t be able to take care of the Chronic patients. *

That’s why I tell the mothers especially who have small kids need to take care of themselves well. It’s like the Airline Air hostess reminds them that in case of emergency first mothers have to hook up the oxygen bags and then try to help their kids. Mothers tend to take care of their kids first but they won’t be able to help them if they are not breathing properly.

TO ALL THE CARE GIVERS “'HAT’S OFF TO YOU ALL FOR TAKING SUCH GOOD CARE OF ALL OF US.” HOW CAN WE THANK YOU FOR BEING SO PATIENT, LOVING AND CARING EVEN THOUGH THEY’LL BE UNDER SO MUCH STRESS. BRAVO TO ALL THE CARE TAKERS AND WE BOW TO YOU IN RESPECT AND SAYING LOTS OF THANKS, GIVING LOTS OF LOVE AND HUGS.

Hope all the families in the Support group have wonderful weekend and a very Happy Father’s Day to all of you.

Lots of love and many hugs,
Durga…

#14

Yes, I totally agree with what you all said about caretaker burnout. Too often people in those situations forget to take care of themselves, forget it is not only ok but good to take time away. It is such a difficult situation.

I guess it was different because when I was at my worst was when I didn’t really have any one to rely on. People were good to me in the very beginning, but things weren’t so bad then. Quickly though, that faded as everyone was so busy with their own lives and problems. I was alone far too much and sometimes at times when I really shouldn’t have been alone. It creates a tough situation because I wanted and needed someone looking out for me yet felt like what right did I have to expect that from anyone. What right did I have to expect anyone to put aside their own life to look after me? I still don’t know the answer. Luckily I am in a better situation now. I can only hope and pray it continues.

#15

Dear Karas-matic:

Please don’t feel alone. There are a lot of us out here who know your pain and understand that others do not. Hang in there and find happiness in the little things. Take care. I wish you wellness.

EllenC

#16

I sure do understand your pain. please if anyone out there knows of a doctor who is knowledgeable about the pancreas in the tampa florida area, let me know. i have a gi but he can only give me acid reducers for the pain. thanks