I'm a patient.
I've been a 'caretaker' many times; for my husband, for my parents, for my siblings and for my children. I know how to be a caretaker.
At least, I thought I knew how to be a caretaker.
Now I'm not so certain.
For the last year, during the diagnosis, the beginning chemo, the autologous transplant and recovery, I've had caretakers who have been selfless, supportive ... wonderful. Always there for me; willing to be with me, do for me...
They are driving me NUTS.
Don't get me wrong; I love them; my daughter, my mother, my sister; I am deeply grateful for their time, their love and their support. They have given me service and time and unconditional support.
So ... with all that, I have to ask; does multiple myeloma really drop one's IQ 30 points? Because, for some reason, all those around me seem to think so. True, my short term memory is shot (chemobrain is REAL, folks), but since my entire life has been dealing with hell and the hereafter (as in, when walking into a room, I sometimes wonder what in hell I'm here after). I can get around that. I'm an expert at coping with short term memory problems.
Sometimes ... no, make that fairly often ... I feel like I have somehow disappeared and only the cancer is present at appointments, etc.; bring a caretaker, and the conversation is between doctor and caretaker. Sometimes I feel like shouting HEY! I'M OVER HERE!
......and I can't really express the frustration, because, well, I love my mother, my sisters and my daughters. I just wish that they would remember that they are my mother, my sisters and my daughters, not my 'caretakers.'
I can't really yell at mine, because I would only hurt them and they don't deserve it. I can yell at yours, though. If you are a 'caretaker,' please remember that your loved ones are still your loved ones who only HAVE multiple myeloma. They didn't become multiple myeloma, No fae reached into their beds and kidnapped your loved one and dropped a changeling in his or her place.
Oh ... and most of the time, at least, their brains work just fine.
There. End of rant.
Forums
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: patients and caretakers
Hi Dianaiad,
Sometimes it's great to rant - frustration needs an outlet. Just wondering - are you still on dex?
All the best,
Libby
Sometimes it's great to rant - frustration needs an outlet. Just wondering - are you still on dex?
All the best,
Libby
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Patients and caretakers
Tonight we started Hospice for my mom. We caregivers, who live, sleep, breathe Multiple Myeloma. We caregivers who are terrified of losing our loved ones to this hated disease. We have gladly given everything we have. We have been the advocates when nurses try to take blood pressure over a PIC line, or when memory fails about the simplest things in daily life. We caregivers would give anything to make this go away. We caregivers will be left behind. We caregivers suffer, feel guilt, regret, hope, and we become Multiple Myeloma because if what it does to us all.
Re: Patients and caretakers
First of all to Kirsten,very well said, and I'm so sorry you've reached the point of Hospice.
As a caregiver for my husband, I can understand your feelings dianaid. Many times in the past two and half years, my husband has been unable to speak for himself or make decisions. So I've done more of that then I care to.
Right now, he is remarkably able to speak for himself. At those times, I try to stick a sock in it. I can't leave it all up to him, but he's aware of that. But what I can't do is sit and let him leave out important details or gloss over things that seem unimportant to him, even tho I know they are not.
So its a dance. We just try to find the best balance we can. I've also had to remind my husband more then once that he may be the only one who has multiple myeloma, but both our lives are greatly affected. So, I say things like we have a doctors appointment, or a stress test. And sometimes he doesn't like that. But I don't like it either.
One thing that does work for us is to speak honestly about it with each other. You don't have to yell. But if you talk to each other about it, you may all come to a better understanding of how the other person feels.
As a caregiver for my husband, I can understand your feelings dianaid. Many times in the past two and half years, my husband has been unable to speak for himself or make decisions. So I've done more of that then I care to.
Right now, he is remarkably able to speak for himself. At those times, I try to stick a sock in it. I can't leave it all up to him, but he's aware of that. But what I can't do is sit and let him leave out important details or gloss over things that seem unimportant to him, even tho I know they are not.
So its a dance. We just try to find the best balance we can. I've also had to remind my husband more then once that he may be the only one who has multiple myeloma, but both our lives are greatly affected. So, I say things like we have a doctors appointment, or a stress test. And sometimes he doesn't like that. But I don't like it either.
One thing that does work for us is to speak honestly about it with each other. You don't have to yell. But if you talk to each other about it, you may all come to a better understanding of how the other person feels.
Re: Patients and caretakers
Thanks for your vent. As a caregiver I kinda needed that kick in the but.
When days were bad I had to take over everything. Decide what he would eat. Deal with doctors and meds. Get him to exercise. Etc, etc. I read your post and kinda thought it over. Then we went for a doctors appointment. I caught myself answering questions he could answer. I referred to we. When in reality it's him. We don't take our meds. I was actually talking like he was a child. Not a 47 year old man who ran his own successful business.
It's so hard to balance caregiver and wife. Seems I lost the wife part. Thank you for your honesty I know your family members are trying to help and are helping, but guess all us caregivers need to be reminded we are there to help, not to take over.
When days were bad I had to take over everything. Decide what he would eat. Deal with doctors and meds. Get him to exercise. Etc, etc. I read your post and kinda thought it over. Then we went for a doctors appointment. I caught myself answering questions he could answer. I referred to we. When in reality it's him. We don't take our meds. I was actually talking like he was a child. Not a 47 year old man who ran his own successful business.
It's so hard to balance caregiver and wife. Seems I lost the wife part. Thank you for your honesty I know your family members are trying to help and are helping, but guess all us caregivers need to be reminded we are there to help, not to take over.
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Terrilynnn - Name: Terrilynn
- Who do you know with myeloma?: Boyfriend
- When were you/they diagnosed?: May 18 2013
- Age at diagnosis: 46
Re: Patients and caretakers
Thanks, dianaiad, for a timely post. Keep up the good fight!
I hope you find the opening with your caregivers to discuss your expectations for your role and theirs in your journey. Lovingly listening to one another's concerns, hopes and expectations is so, so important. If it helps, this is how we've evolved in our dealings with one another and the rest of the world:
The first month, we talked before the visits and wrote down concerns and questions. I did most of the talking. I attended every treatment and test possible. He was still in shock, in a physical crisis, and laser focused on getting past the acute phase. He decided I do the research and gain as much understanding about the disease as is warranted. He would pour all the energy into a full on fight with the disease.
I see it as it is his life - and he ultimately must decide what course is best. My role is to make sure he has considered the pros and cons at decision points, be a second set of ears, intervene when necessary, and the human data/memory bank. Mistakes are going to be made periodically; fewer mistakes get made if they are caught ahead of time.
Since then, we still talk before visits, write down questions, concerns and any changes since the last visit for the doctor's benefit. He does nearly all of the talking in the visit. We are making our way back to more self-dependence and it's great to see his progress. The roller coaster is never far away, the rough patches require shifts in responsibility, and the journey looks like it has a long way to go.
Like others have said, I don't stand back when he's glossing over important things, or forgetful about things that matter when it comes to fighting the fight. I can so relate to cindylouise's comment about "sometimes he doesn't like it. But I don't like it, either". There's been a lot neither one of us has liked - and acknowledging that fact helps to get over that hump and on with the journey at hand.
Wishing you and yours all the best!
I hope you find the opening with your caregivers to discuss your expectations for your role and theirs in your journey. Lovingly listening to one another's concerns, hopes and expectations is so, so important. If it helps, this is how we've evolved in our dealings with one another and the rest of the world:
The first month, we talked before the visits and wrote down concerns and questions. I did most of the talking. I attended every treatment and test possible. He was still in shock, in a physical crisis, and laser focused on getting past the acute phase. He decided I do the research and gain as much understanding about the disease as is warranted. He would pour all the energy into a full on fight with the disease.
I see it as it is his life - and he ultimately must decide what course is best. My role is to make sure he has considered the pros and cons at decision points, be a second set of ears, intervene when necessary, and the human data/memory bank. Mistakes are going to be made periodically; fewer mistakes get made if they are caught ahead of time.
Since then, we still talk before visits, write down questions, concerns and any changes since the last visit for the doctor's benefit. He does nearly all of the talking in the visit. We are making our way back to more self-dependence and it's great to see his progress. The roller coaster is never far away, the rough patches require shifts in responsibility, and the journey looks like it has a long way to go.
Like others have said, I don't stand back when he's glossing over important things, or forgetful about things that matter when it comes to fighting the fight. I can so relate to cindylouise's comment about "sometimes he doesn't like it. But I don't like it, either". There's been a lot neither one of us has liked - and acknowledging that fact helps to get over that hump and on with the journey at hand.
Wishing you and yours all the best!
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philatour
Re: Patients and caretakers
That's quite a set of replies!
I'm sorry if I have offended caretakers out there; trust me, I KNOW what it's like to be in your shoes. My husband died of throat cancer, and I was his caretaker for a year and a half; I did the doctor's visits, the medication tracking, the hospice, the feeding tube maintenance...at the end he was my 180 pound infant, physically.
So, I know what being a caretaker to a very sick patient is like. I know how it can take over your life even when the patient is trying really hard NOT to let it take over his.
In other words, been there, done that ... wish now I'd done some things differently, because now that I'm the patient, my perspective is different. Of course, it's still my perspective and not that of any other patient, but ....
I just wish that my relatives saw themselves as relatives, not guardians and caretakers, especially when I don't need (as in, right this minute) either guardian or caretaker. I know; when you love someone and see him hurting, fighting something he can't win against, you want to make it all better in any way you can; I certainly did. The trick is to remember who your loved one is, really.
I'm sorry if I have offended caretakers out there; trust me, I KNOW what it's like to be in your shoes. My husband died of throat cancer, and I was his caretaker for a year and a half; I did the doctor's visits, the medication tracking, the hospice, the feeding tube maintenance...at the end he was my 180 pound infant, physically.
So, I know what being a caretaker to a very sick patient is like. I know how it can take over your life even when the patient is trying really hard NOT to let it take over his.
In other words, been there, done that ... wish now I'd done some things differently, because now that I'm the patient, my perspective is different. Of course, it's still my perspective and not that of any other patient, but ....
I just wish that my relatives saw themselves as relatives, not guardians and caretakers, especially when I don't need (as in, right this minute) either guardian or caretaker. I know; when you love someone and see him hurting, fighting something he can't win against, you want to make it all better in any way you can; I certainly did. The trick is to remember who your loved one is, really.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Patients and caretakers
Each of you has spoken candidly, and that is a good thing. As a caregiver many times over, I have learned a lot. At the same time, I certainly don't try to fool myself into believing I know it all. One thing that struck a chord with me was about doctors and caregivers talking around the patient--that is so disrespectful. In fact! It is one of my pet peeves! Sometimes the patient doesn't feel like talking or can't respond, but he/she still needs to be treated with dignity and included. A gentle touch as you are talking and looking at them while talking is essential--do something to make them feel included!
Being a caregiver is a HUGE responsibility, and it is one I consider a blessing. I know I probably fall short at times in the role, but I do my best. Bottom line though, sometimes my best simply isn't good enough.
As for being the patient, I feel it must be extremely difficult to turn over routines of daily living to others and to rely on others for help for even the most mundane tasks. It has to be frustrating and sometimes maddening. I know my husband probably thought I was a beast when I was his caregiver going through the multiple myeloma process of chemo and ultimately two stem cell transplants. Going into it though, I told him flat out if I ever seemed impatient to NOT take it personal, and he said the same thing to me.
Open lines of communication are very important for both the patient and caregiver. Remember, no one, absolutely no one knows how you feel or what you think unless you tell them. I know -- it's sometimes hard to say the words, but these people who are your caregivers care and do love you, so that knowledge will help!
For the one here who has been a caregiver many times over and is now the patient, I do think your understanding is good. As for losing those IQ points -- no, you are, just as you said, exhibiting a bit of chemo brain; you are merely tired and exhausted from the whole scenario!
My experience as a multiple myeloma caregiver was just that -- he had that chemo brain, but he did bounce back. It's all a slow process, and it's one that requires a lot of patience and understanding. I know -- sometimes easier said than done, but that's the truth of it all! Prayer helps too ... a lot! I think I bent St. Jude's ear every day, several times over!
Being a caregiver is a HUGE responsibility, and it is one I consider a blessing. I know I probably fall short at times in the role, but I do my best. Bottom line though, sometimes my best simply isn't good enough.
As for being the patient, I feel it must be extremely difficult to turn over routines of daily living to others and to rely on others for help for even the most mundane tasks. It has to be frustrating and sometimes maddening. I know my husband probably thought I was a beast when I was his caregiver going through the multiple myeloma process of chemo and ultimately two stem cell transplants. Going into it though, I told him flat out if I ever seemed impatient to NOT take it personal, and he said the same thing to me.
Open lines of communication are very important for both the patient and caregiver. Remember, no one, absolutely no one knows how you feel or what you think unless you tell them. I know -- it's sometimes hard to say the words, but these people who are your caregivers care and do love you, so that knowledge will help!
For the one here who has been a caregiver many times over and is now the patient, I do think your understanding is good. As for losing those IQ points -- no, you are, just as you said, exhibiting a bit of chemo brain; you are merely tired and exhausted from the whole scenario!
My experience as a multiple myeloma caregiver was just that -- he had that chemo brain, but he did bounce back. It's all a slow process, and it's one that requires a lot of patience and understanding. I know -- sometimes easier said than done, but that's the truth of it all! Prayer helps too ... a lot! I think I bent St. Jude's ear every day, several times over!
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Marcia L.
Re: Patients and caretakers
Diana -
Well said!!
Thank you!
Well said!!
Thank you!
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Amelia - Name: Amelia
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: December 2011
- Age at diagnosis: 52
Re: Patients and caretakers
I know that I have frustrated my husband occasionally as his caretaker. I try very hard to make sure that his is seen as himself, rather than his diagnosis, and I try not to answer for him or talk over him when we are talking to his doctor.
The thing is, the caregiver is sometimes the only one who has the perspective to see what is happening. My husband may be of the opinion that he only has a little chemo brain and does not even need me at his doctor's appointments (an ongoing point of contention), but then I see that he has forgotten that the doctor spent 20 minutes explaining that she was stopping one chemo and continuing the other (my husband argued this with me for quite awhile, til he saw that his infusion appointments had been removed by the doctor).
When he started a new drug and the doctor asked if he was having side effects, he said "No". I had to point out that he had a rash and when they took his blood pressure it was dangerously low. He was having a severe allergic reaction.
I am guessing that most caretakers are like me -- we really don't want to be the bad guy, but we also don't want to sit by and watch our loved ones not get the care they need, so we speak up.
The thing is, the caregiver is sometimes the only one who has the perspective to see what is happening. My husband may be of the opinion that he only has a little chemo brain and does not even need me at his doctor's appointments (an ongoing point of contention), but then I see that he has forgotten that the doctor spent 20 minutes explaining that she was stopping one chemo and continuing the other (my husband argued this with me for quite awhile, til he saw that his infusion appointments had been removed by the doctor).
When he started a new drug and the doctor asked if he was having side effects, he said "No". I had to point out that he had a rash and when they took his blood pressure it was dangerously low. He was having a severe allergic reaction.
I am guessing that most caretakers are like me -- we really don't want to be the bad guy, but we also don't want to sit by and watch our loved ones not get the care they need, so we speak up.
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