I am a caregiver to my mother, who is experiencing chronic severe pain, among other things. It is incredibly difficult to watch a loved one missing out on life experiences, and it's also difficult to know how to help this person, as well as how to help yourself and the rest of your family. I don't think you need to be ashamed of your feelings; I've often wondered if other conditions would be "easier," as it seems more acceptable or easier for others to relate to other conditions.

I'm new to this group, and to online forums in general, but I would also like very much to connect with others sharing similar experiences. Any ideas would be welcome!

I, too, am caring for my husband with chronic illness (including pain) and we have small children. It's exhausting for all of us. His pain management meds make his mood worse, and he has developed addictions--which cause their own problems.

Often he takes pain medication for "emotional" pain or to escape instead of or in addition to the physical pain.

I am caring for my husband who is in pain also, not unbearable or chronic pain. I do agree with your statement wondering if it would be easier if it was cancer. That word alone gives you immediate empathy from others and an understanding of how hard life can be. Those of us who have to deal with lesser known, or even worse, mental illness are left to handle things on our own or even shunned for our illness. I'm a survivor of childhood sexual abuse. I recovered the memory of being raped at age 7 about the same time my sister was diagnosed with breast cancer. She got all the support and I was shunned. Sixteen years and still not one of my 6 siblings has come near me. Sorry just a little self-pity there.

I hope you find the help you are needing. It is difficult with small children. I'm grateful that the small children in our life are grandchildren and can be cared for by their parents. Yours is a hard road. How old are your children?

It is hell its as simple as that,you never know what to expect each day .I watched my mother bring up our brother who had multiple surgery and was always in pain, he would get angry violent moody depressed sometimes all in one day but sometimes we got to see his beautiful happy gentle and caring self. Mostly we tryed not to feel his pain or watch our mother suffer from his pain. The sadest thing is even though he is intellegent goodlooking and a beautiful person he has never been in love will most likely never have children of his own and know what that feels like. I have left home as I have my own pain issues(result of accident) and did not want to give my Mum another child(adult) to look after.I know it sounds terrible but im so glade im not there to see there pain, Mum always jokes and makes light of the situation but i have heard her cry and seen her pain, but God they are incredible I always say he is a worrior to have survived the hell he has been thorugh all his 33years( so many operations since he was small)and Mum is his guardian angel,she used to tell us when we were small he was especially sent to us by God because he wanted us to learn how to be patient and loveing and compassionate and he was really an angel in disguise.So for 33 years mum has been his carer, she gets angry frustrated tiered but she keeps going and I believe all carers truly are guardian angels,even when they loose it yell scream cry and every now and again they give up or in depending on the situation but they are always back on duty next day and mum does laugh and she gardens and seems to get joy from little things and really values life sometimes I think what she told us when we were small is actually true he was a gift to our family pain and all but she is deffinately an angel.So if you are a carer then you probably get angry tiered lonley frustrated and plain crazy which are all traits of Carer Angels so just go with it for tomorrow is another day.

Whoops not that it makes any difference but my brother is actaually 37

It really makes me feel better, just knowing that there are other people out there going through this.
I hope we can offer each other support and friendship.

caringwif
I am actually in the opposite boat as you, I have a lot of medical things going on (paraneoplastic disease, autoimmune autonomic neuropathy, autoimmune disease) and my fianc (usually my Mom too) are always there for me, and I came to this site to see if anyone had any advice on what the person that is sick can do to make the caregivers (in my case I would not say care giver, but they do so much to help me) job easier. I feel like so much is all about my health and how I am feeling, basically all about me. I see the emotional pain it causes them to see me hurting so much and there be nothing they can do about it and it breaks my heart, yes I know it is because they care, but still it hurts none the less. Any ideas on what I can do to make it easier on them would be greatly appreciated

I have been on both ends of the spectrum. Starting with my husband, who was a dialysis patient as well as having diabetes to the extent his feet became full of serious wounds. Additionally, He got a severe infection from the port used for home dialysis and that was the real beginning of our nightmare. Now, on the other hand, I too have diabetes and developed severe neuropathy, as well as rheumatoid arthritis in my hands, depression and several other issues. It really took a toll o n me trying to take care of him. I finally had to give up my job of 23 years due to my own medical issues. It hurt me like crazy to see my husband of 37 years deteriotate to the point that he had to depend on my for everything from taking him to dialysis, dressing him, feeding him, caring for his wounds and everything else that he needed. I took care of medication management, multiple dr appts and just trying to make him comfortable. It hurt so bad to watch him just sit there and not be able to stand up. He eventually developed sores on his behind because he could not do anything but sit. He was not able to lie down in the bed because it caused him further discomfort.

Meanwhile, I started losing weight, trying to hide my pain from him, becoming extremely depressed and afraid. I would go to a different part of the house and just cry every chance I got. I didn't understand my pain or it's causes. My husband was hospitalized for 41 days at one point. I spent time with him everyday and usually when I woke up in the morning, I started crying right away because of the physical pain of trying to dress myself and trying to control my emotions for when I got to him at the hosp.

You know how hospitals are. The hallways are very, very long and getting from the parking lot inside the building was a challenge itself. Then I would get a wheel chair and park it just outside of his room so he would not see me in it. The nurses kept it at their station for me.

He wanted to come home so bad. I hated having to put him in a nursing home until I could get a little bit better myself to take care of him.

One of our sons moved back home to care for both of us. This son was in Afganistan as a reservist and has PTSD. But he was a Godsend. He cared for both of us. My health went neglected because my husband needed me full time and I needed him. I think deep in our hearts we both knew what we didn't want to know. When he was home, we had to call rescur several times to transport him to the hospital because of seizures.

Finally, the doctor called me and the children in and told us that he would not get any better. He stopped eating and had to have a feeding tube put in place. Lord, it hurt like the devfil to see my hero in this condition.

He was transported to Hospice and my daughter and I stayed with him 24/7. The became comatose but we continued to talk to him about happy stuff and be "normal" in his presence. He passed away March 13, 2008 with me by his side talling him that I loved him. I had just returned to Hospice after a trip home to check mail and pets. I was stroking his hair, telling him that everything was fine at home and that I loved him very much. He opened his eyes for the first time in days and stared directly at me. It felt as his eyes were screaming "I love you" over and over. Then it happened. He took his last breath. It was a beautiful experience that I would not trade for anything.

Somehow, I got thru the next few days going thru the motions of making arrangements, etc. My son and actually all of our children were instrumental in helping me get thru.

My stress level skyrocked and so did my pain and depressdion. Honestly, I feel like I have been to the depts of hell and back. Only God got me thru. Only God in everyway. I can't tell you how I survived, all I know is that I did.

My son stayed with me and did the best he could. He has his own issues with PTSD.

I still suffer a lot from a variety of things, the main two being chronic pain and depression. HOWEVER, I would not trade one m oment of the time I had with my husband. I have such comfort in knowing that I did my absolute best to take care of him. He was the love of my life. I miss him terribly.

Now, I am able to take care of myself in a limited way.l I get confused easily. I need help with medication management and I am so very lonely. After my experience with my husband, I really worry about who will care for me when I can't anymore. My son has been awesome but needs to m ove on with his life. I don't want to burden anyone, although I know my kids wouldn't look it like that.

I try to hide my pain from them Thank God for this site so I can put my true feelings down. I can't share them with anyone else.

Apologize for this being so long but just needed to share.

When you truly love someone, you will not be able to not worry and feel empathy for what they go thru. Additionally, the one receiving care can't help but feel pain for the caregiver. That's what love is.

It's a blessing to love and be loved like that. Thank you God for the incredible man you put in my life. Thank you God for allowingt us to make wonderful memories that help me thru each day. Order my steps in your word and help me to make the decisions that will govern the rest of my life. My husband and I use to make them together. Now I need your guidance and unconditional love to sustain me until I see him again in your Kingdom. Amen

jcc

jcc
You have been though so much it saddens me, I dont even know what to say, you are an amazingly strong strong person with a wonderful outlook on life. You never need to apologize for writing a lot that is what we are all here for, you can write me a message anytime
Thoughts and Prayers

Thank you Lela27. I really appreciate your comments.I don't feel very strong but I have faith and hope for a better life. I remain afraid of the decisions that must be made and find that DS has become a catalyst for me to start my day. First thoughts in the morning are "Thank You God". My relationship with him has escalated so much because I know he loves me. I have come to appreciate just how awesome God really is. When my husband passed away, I vocally thanked God for accepting him into his Kingdom where I kinow he is pain free. I had to love him enough to let him go.

Butterflies, birds singing, a cool breeze and the majesty that I see in trees are so special and demonstrate just how awesome God's grace and love for us is.

I am just so lonely and not sure of myself and the decisions that I make from day to day. I have made my own funeral arrangements and started paying them off to keep my children from having to deal with that difficult time when it comes.

When my husband was alive and well, we made each other the beneficiary of everything. I found it hard to change everything. Take his name off important papers and reassign them.

I encourage everyone to put some thought into their future in case something happens to one of them...how would the other handle day to day stuff, problems, etc.

Now, I volunteer at a local hospital a few hourd a week. Something to do on my good day. It helps with my depression some.

Please, please, keep me in your prayers. I want to be happy again but I am afraid to get out of my comfort zone to explore life without him.
Thank you and God Bless
jcc

My husband has had five failed back surgeries, and experiences chronic, daily pain (7-8 out of 10, all day). For the first 20 mins or so after he takes his pain meds, his pain is around a 5-6, but never drops lower. He is so used to his pain meds that they bring him very little relief, but without them, he is really unable to function. He's spending more and more of his day curled up on the floor, trying to deal with the pain. He is a wonderful husband and dad, and tries to do as much "daily" activity as he can--cooking, laundry, helping around the house, volunteering in the kids' classrooms, etc... even though the result is often several hours of unmanageable pain. It is very hard to watch, but harder to deal w/because I am an extrovert, talker, communicator--and he has to withdraw to deal with his pain. We seldom go out with friends, family, etc... because it is difficult for him to sit through even a dinner. He will go wherever, whenever--to avoid telling me that he feels too bad to go, but he hurts so much while we're gone that I feel terrible guilt asking him to do anything.

I miss having good, deep conversations with him when his mind is on something besides pain. I miss having outings with friends, as a couple. I can go to coffee, etc... with my friends, but I miss going places with him. I miss him being totally "present" in our family--rather than trying to focus on pain management all the time. I try so hard to be compassionate, but the worst part for me is that I begin to feel angry and resentful--and then I feel guilty for feeling that way.

More later, but glad to see some friends.

S

jcc thank you so much for sharing so deeply. My heart goes out to you.

Wow, I think I just found a whole group of people I can totally relate to. My husband suffers from chronic severe back pain. He's had problems with it for 15 years. It has been completely debilitating. He tried to warn me before we got married that he was disabled, but I thought I knew what that meant. I mean, my mom had polio when she was 10 and I grew up with her on crutches and in a wheelchair in the days before handicapped parking and accessible bathrooms. She's a speech therapist and had a private practice at the house, so I also grew up playing with kids who had intellectual disabilities or who had been in accidents and had had head trauma. I felt really prepared for living with someone with a disability, but I discovered there are different types of disabilities. My mom and the kids I played with had static disabilities - they didn't really change. You figured out how to accommodate the disability and moved on. My husband's disability is both dynamic (what he needs help with changes from day to day) AND progressive (he keeps having to have additional surgeries because the discs in his back are deteriorating). PLUS everyone has sympathy for someone on crutches or in a wheelchair. They can SEE the disability. People look at my husband parking in the handicapped parking place like he's a horrible person. They don't understand that while he can walk, he can't walk far.
If any of you who have responded to Caringwife need someone to talk to, I'm here for you.

Oh, I forgot to tell you all, like Shannita's husband, mine had been on so many meds for so long that they weren't working anymore. His pain was an 8-9 all the time and it was causing his BP to skyrocket. He's already had a double by-pass and a stroke, so this just terrified us.
Out of sheer desperation, I went searching for a clinic near us that would give him cobra venom injections (a cousin of mine had those and she's been pain free for nearly 3 years now). What I found was this OTC stuff called Cobroxin. It's FDA approved, diluted cobra venom. It comes in gel form and oral spray. We got both. I rub his back down 2-3 times a day and he uses the oral spray 2-3 times a day. It took about a week to have its full effect, but he's been off ALL pain meds AND his BP meds for 2 months now. It's definitely worth a try for those of you who are hurting or whose loved ones are hurting.

So interesting, EverythingToAll! I'm going to check out the Cobroxin today... We are ready to try anything, as it's so hard to watch my husband become more and more disabled and frustrated.

I'll keep you and your husband in my prayers, as I do believe that God sustains!

Love,
Shannita