Hello, This is Linda's Husband Bob. As her primary caretaker, I'm wondering if there are any others out there that would like to share their experiences caring for their loved one as they go through this process. Linda and I have been married for over 40 years and to tell the truth, I always thought that I would be the one to suffer from some kind of devastating disease as this. I retired from 22 years active service in the Army as a 1st Sgt (Infantry), I also retired later from teaching. This has been a really devastating event in our lives and my therapist suggested I post this and get an idea how the spouse's are handling the treatments of their loved ones. I find myself trying so hard to be the strong one and provide the nurturing environment she needs. Sometimes I joke to her "how come I have to be the grownup in all this"? I it so hard o see her go through the pain and discomfiture associated with this disease. Sometimes I feel like I'm the only one out here. Any comments? Linda understands my feelings, she is a Licensed Counselor so she agrees maybe we could benifit from sharing our experiences this way. Any Comments?
Bob
Forums
7 posts
• Page 1 of 1
-
lindagc - Name: linda
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: April 2012
- Age at diagnosis: 58
Re: Looking to connect with other caregivers
Hi Bob,
My best friend and husband of 28 years was diagnosed 5 years ago. Like you, this is not where we envisioned we would be at this stage. We are not 50 yet. Our situation is different from yours in that my husband continues to work. I gave up my teaching contract and substitute for the flexible schedule. I did that right before his stem cell transplants and the flexibility allows me to better manage his care, which is how I cope.
I am a very social person and I find Bryan's myeloma to be isolating so I turned to the forum hoping for contact with people who understand. I would be happy to communicate with you and share experiences.
Wishing you well, Beth
My best friend and husband of 28 years was diagnosed 5 years ago. Like you, this is not where we envisioned we would be at this stage. We are not 50 yet. Our situation is different from yours in that my husband continues to work. I gave up my teaching contract and substitute for the flexible schedule. I did that right before his stem cell transplants and the flexibility allows me to better manage his care, which is how I cope.
I am a very social person and I find Bryan's myeloma to be isolating so I turned to the forum hoping for contact with people who understand. I would be happy to communicate with you and share experiences.
Wishing you well, Beth
Re: Looking to connect with other caregivers
Hi, Bob --
I'm the caretaker for EJ, who was diagnosed in Sept./Oct. 2010. So far EJ has had his induction therapy and a SCT. His M-spike has been holding steady at .1 since his SCT.
He's had a few bumps in the road - overexherted himself early on and developed a high fever, got shingles from Velcade, and discovered that he has a severe allergic reaction to penecilin in the middle of his SCT, and some unresolved (in my mind) issues with his liver. But all in all, he is doing quite well and leads a very normal life. He still works and plays competitive volleyball once or twice a week, and we are starting to renovate a house! I should also say that we just got married in March, 2012!
Early on in this process I learned that I cannot be allthings to EJ. It exhausted me, and wasn't particularly helpful to him. For both our sakes, it has worked out better for him to take responsibility for his cancer, including setting up appointments with his onc. and scheduling his infusions. I only go to major appointments, when there may be a change in treatment, when its helpful to have a backup person to listen. I also seem to be the one more interested in keeping up with myeloma news, and new treatments, side effects, etc. Its been a little over 18 months since his SCT, and I'm worried about will happen when he relapses. I suspect he will take more of an interest "all things myeloma" when we get to that point, right now he's just happy living his life.
Lyn
I'm the caretaker for EJ, who was diagnosed in Sept./Oct. 2010. So far EJ has had his induction therapy and a SCT. His M-spike has been holding steady at .1 since his SCT.
He's had a few bumps in the road - overexherted himself early on and developed a high fever, got shingles from Velcade, and discovered that he has a severe allergic reaction to penecilin in the middle of his SCT, and some unresolved (in my mind) issues with his liver. But all in all, he is doing quite well and leads a very normal life. He still works and plays competitive volleyball once or twice a week, and we are starting to renovate a house! I should also say that we just got married in March, 2012!
Early on in this process I learned that I cannot be allthings to EJ. It exhausted me, and wasn't particularly helpful to him. For both our sakes, it has worked out better for him to take responsibility for his cancer, including setting up appointments with his onc. and scheduling his infusions. I only go to major appointments, when there may be a change in treatment, when its helpful to have a backup person to listen. I also seem to be the one more interested in keeping up with myeloma news, and new treatments, side effects, etc. Its been a little over 18 months since his SCT, and I'm worried about will happen when he relapses. I suspect he will take more of an interest "all things myeloma" when we get to that point, right now he's just happy living his life.
Lyn
-
Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Looking to connect with other caregivers
Thanks a lot for replying, my wife and I have been married 40 years and we certainly didn't plan on this. Fortunately my military insurance has been super and hasent given us a single problem. Her SCT went well but she still has some myeloma in her blood. Right now we are in the hospital for her second bout of penumonia since the first part of December. I'm trying to be a little more loose in my over watching of her, but I seem to be totally involved in everything she has happening to her. She wants me to get out with my hobby groups, and my sons for fishing and such. I just can't seem to break away.
At the same time, when she gets into one of her "poopy" periods, I begin to contemplate smothering her in her sleep! Ha ha I see a therapist and a psychologist regularly for service connected disabilities. 22 years in the army left a few "ouchies". So the point is, I carry around some excess baggage. Sometime I feel like i'm all alone in this process. Then I have to remind myself that I am not the one with cancer!
Please continue to submit your journey through this process.
Bob
Houston, Texas
At the same time, when she gets into one of her "poopy" periods, I begin to contemplate smothering her in her sleep! Ha ha I see a therapist and a psychologist regularly for service connected disabilities. 22 years in the army left a few "ouchies". So the point is, I carry around some excess baggage. Sometime I feel like i'm all alone in this process. Then I have to remind myself that I am not the one with cancer!
Please continue to submit your journey through this process.
Bob
Houston, Texas
-
lindagc - Name: linda
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: April 2012
- Age at diagnosis: 58
Re: Looking to connect with other caregivers
My husband was diagnosed Dec. 28, 2012 at 46 years old. He had been lingering for awhile beforehand so I was already picking up most of the responsibilities at home.
It's been a shock receiving the diagnosis of multiple myeloma. After the initial adrenalin rush, fatigue & adaptation, the realization of living with this is just sinking in. For the first several weeks there were mounds of paperwork & lots of phone calls. My husband had never gotten around to getting health insurance for himself.
After the initial hospitalization he's settled in a comfortable chair & does not seem to be pushing to build up his strength again. I've been trying to get him to take responsibility for his meds. (which he now does) but he tends to rely on me for more than I have the strength. Especially after chemotherapy treatments,(RVD), he gets downright demanding & weepy. Recently he's started having panic attacks where he feels like he needs to get the ring off his finger so much that he'd have to cut the finger off. I'm not sure if it's the dex. or the Velcade causing the hallucination, but it is bizarre.
To top it off, I'm already physically disabled, I have 3 children at home doing school & one in the midst of applying for college.
For the past 2 days I've felt very stressed about the whole business. It was refreshing to read your posts.
It's been a shock receiving the diagnosis of multiple myeloma. After the initial adrenalin rush, fatigue & adaptation, the realization of living with this is just sinking in. For the first several weeks there were mounds of paperwork & lots of phone calls. My husband had never gotten around to getting health insurance for himself.
After the initial hospitalization he's settled in a comfortable chair & does not seem to be pushing to build up his strength again. I've been trying to get him to take responsibility for his meds. (which he now does) but he tends to rely on me for more than I have the strength. Especially after chemotherapy treatments,(RVD), he gets downright demanding & weepy. Recently he's started having panic attacks where he feels like he needs to get the ring off his finger so much that he'd have to cut the finger off. I'm not sure if it's the dex. or the Velcade causing the hallucination, but it is bizarre.
To top it off, I'm already physically disabled, I have 3 children at home doing school & one in the midst of applying for college.
For the past 2 days I've felt very stressed about the whole business. It was refreshing to read your posts.
Re: Looking to connect with other caregivers
Hi Bob,
Welcome to this forum. I joined about 2 weeks ago. You said your wife is/was a counselor; in fact she was the first one who replied to my inquiry, in a "counseling" way and I was really grateful. I noticed that she got diagnosed in April of last year, so you have a bit more experience than my husband. I was diagnosed about 2 months ago.
I have not started treatment yet but noticed Linda has multiple myeloma/Amyloidosis, as she says, a doubly whammy. I hope she is doing better now as she told me the medication prior to the transplant really was rough on her and she is still recuperating from some of the treatments. My husband isn't qualified as care-taker at this time as there was no care-taking involved with me yet, other than serving me food in bed for a short while after I left the hospital. (I had cancer removed on the neck and a bone transplant there). I am sure you find some caregivers here. Kate
Welcome to this forum. I joined about 2 weeks ago. You said your wife is/was a counselor; in fact she was the first one who replied to my inquiry, in a "counseling" way and I was really grateful. I noticed that she got diagnosed in April of last year, so you have a bit more experience than my husband. I was diagnosed about 2 months ago.
I have not started treatment yet but noticed Linda has multiple myeloma/Amyloidosis, as she says, a doubly whammy. I hope she is doing better now as she told me the medication prior to the transplant really was rough on her and she is still recuperating from some of the treatments. My husband isn't qualified as care-taker at this time as there was no care-taking involved with me yet, other than serving me food in bed for a short while after I left the hospital. (I had cancer removed on the neck and a bone transplant there). I am sure you find some caregivers here. Kate
-
Kate - Name: Kate
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Dec. 2012
Re: Looking to connect with other caregivers
Hi. Another caregiver here, of my Mom. She's 73, diagnosed in May 2010 with kappa multiple myeloma stage II/III. Have to get back to work but glad to connect with other caregivers. (drmom62, I just sent you a private note, hope you receive it).
-
Twi - Name: Twi
- Who do you know with myeloma?: My wonderful Mom, Janet
- When were you/they diagnosed?: May 2010
- Age at diagnosis: 70
7 posts
• Page 1 of 1