I've been a caregiver to my husband with state 4 prostate cancer since january 2007. I now am at home with him all but a few hours a week' I'd say 12 hours. At times we have some very tender moments and at times we have some very tense moments due to frustration, confusion, and fear of the unknown. Is anyone out there having similar feelings? The lack of socialization and feelings of isolation can really get me down, plus hy husband is incredibly bored. TV is his only recreation, plus reading a few articles in the paper each day.
What you are going through is normal. Frustrating at times, but lots of spousal caregivers experience this.
Two points: First, you are _not_ responsible for entertaining your ill husband. You can make suggestions, but he has to make the choice to do something, or be bored. And believe me, both are choices.
Second, it will help you to have regular breaks for yourself... see the survey elsewhere on this site -- 54% of those caregivers answering allow almost no time for themselves. If your "12 hours" away from the home is completely taken up with doing household errands, that's not time for yourself. Break time means doing something you really like to do, not caregiving-related, either alone, or preferably, with friends or relatives. That's where you'll get your socializing.
I should know. I was a spousal caregiver for 29 years of our 31-year marriage, until my first wife died in 2004. Now I'm the President of the Well Spouse Association (http://wellspouse.org). Check out the site.
The advice from the president of the Well Spouse Association is good advice and deserves your attention. Click here to see what the Well Spouse Association offers, and check back at caringtoday.com and Caring Today magazine for an upcoming interview with this gentleman.
Dad's reseach helps others to help boy with rare condition. You can read what our local newspaper wrote about the fight we had with the hospitals, doctors, school system,and all the others( PT, OT, Speech therapies, and the orthotic people). His web site is www.naturalremediessavedmyson.com. It has been a long 4 years now that our son has been through hell and back so many times, that if not for the all Almighty Creator he would be dead. The condition was called Primary Angiotiis Central Nervous System Vasculitis. In short his auto-immune system was destroying his viens in his brain. I've been reading your magazine ever since the summer of 2004 after they did his brain biospy. His doctor at the time was Dr. Peter Rueman with the Children's Hospital Medical Center of Akron, in the stste of Ohio. In his nearly 40 years of treating kids(pediatrics),has seen only one case at the beginning of his practice.It wasn't till his second or third stroke and after a brain biospy did we know for sure what our son had. PACNSV is a very rare condition that if it was 20 years ago he would have been dead by now. Once his diagnosis was confirmed by his brain biospy and the advise from Dr.Reuman, to search the internet for answers about his disease did we find an alterative way to help keep our son stroke and seizure free. Your little magazine has been of some help with our fight, but it is mostly about older persons then for what our son has, but again even though it more for the elderly it has helped with treating our son. I just wanted to thank all the people involved with this publication. Caring for people not just the elderly but all people would be of a great help to others who are having a hard time dealing with their own fight. Caregivers come into play with all persons of all ages. Again, thank for all your help through the years.
Hello. I am also a caregiver for my mother who had a severe stroke two and half years ago. My mother can't walk or talk and has some confussion due to her stroke. My father passed 10 months prior to her stroke. I can somewhat relate to your situation regarding isolation in some respects. I had maintained a very active lifestyle prior to my mom's stroke. I was a sale's representative and a captain of two volleyball teams and played tennis on the side, along with various other activities.
I'm not sure if your husband is bed bound? If so, there are a few activities for you both to do. My mom use to be bed bound and one nursing facility mentioned respite for her. Although, she is completely beyond what once was a bad situation (the nursing facilities had changed all her medications and even sadated her at one point - long stories). She is well beyond a cycle of "nursing care", or lackthereof, thank goodness.
What I have done to stay busy and active is:
-I take her outside and let her watch me as I work in the flower plants or garden.
-I take her to Michael's or Joanne Fabric's to pick out things for her to paint, stich or work on. (She only has her left hand to work with, and was right handed)
-The senior citizen center has activities, bingo and social events.
-If he is well enough to sit in a wheelchair, you could both volunteer your time together sorting things at a food and shelter place.
-church. We go to church and we also have church members come to our house for service.
-remodel or clean home. It can be affordable and inexpensive if you watch for sales on paint or whatever and just take your time. It will pay off in the long run.
-you have online services, which is a great place to interact with others. There are a few things for you both to enjoy: as a caregiver you could further your education by taking online college classes, interact on forums about your situation and meet new people and perhaps help others, use the internet to learn how to help yourself and perhaps help others, your husband could learn to use the internet to play free poker or free online games, enter reputable sweepstakes (which I've won stuff from nabisco, hersheys, mgm, caribou coffee, etc.) I've won from over 20 some reputable companies. As a caregiver, learn how to do a family tree online and research your ancestors. You can put together some ideas on scrapbooking online and then print pictures out or order them online and get your husband involved with helping putting them in the books and organizing them. Start a recipe book together with your husband and organize it together. Let him pick out recipes either from a book or online and together you both will have created something special together.
I know your situation is difficult but I'm sure your husband is angry with the cancer and he has no outlet. So, remember that rather than arguing through what may be some of his last days (or not?) that it is best to possibly agree in some fashion and walk away from the situation. Make sure you find a way to regroup and try to keep your husband occuppied as much as possible and you will be fine.
I just turned thirty seven and I've been a caregiver for my mom for two 1/2 years. She is a diabetic and needs insuline shots amoungst other caregiving needs; bathroom, showering and other things. During the time I was watching my mom, my sister moved back home and eventually needed to be cared for too. Due to my situation, I had to tell my sister that it wasn't possible for me to caregive to her as she wasn't able to walk, shower or other things either. They had moved her to a nursing facility when she ended up in the hospital. So, life can throw a few curveballs your way. I have taken day by day and have overcome some very big obstacles and foremost my mom has overcome many of her obstacles and is living a life that she feels a little bit in control of with her determination and vigar to do what she can.
I read your post and I'm sorry to hear about your son and his diagnosis. I'm sure it was somewhat of a relief to understand what had triggered the strokes. A big part of understanding how to care for someone is learning about their diagnosis. I say that because a diagnosis is complicated and if you sometimes don't understand the way a stroke affects the patient it can be difficult as a caregiver to fully comprehend what or why things happen the way they do. Primarily with stroke patients due to the nature of how the brain works. I found the information on ischemic stroke & hemorrhagic stroke enriching as a caregiver. My mother has expressive asphasia (she is able to receive information but unable to properly covey it). She can't talk but we have our own way of communicating which works real well. I have had speach, occupational and physcial therapy for my mom for two years but they had discontinued it. I pushed it as long as I could and have worked with her too. Oddly, she can tell time....I tell her that we will be going to a store at 2:30 and she starts preparing to get ready around that time. She gets up like clockworth every single morning at 5:30 on the dot for two 1/2 years now. I don't particularily like 5:30 am but have adjusted. She seems to comprehend some things and sometimes reminds me if I forget things. Although, I see evidence that there are disconnections with her thought processes through other questions that I ask her. ONE VERY IMPORTANT THING IN THE UNDERSTANDING OF A STROKE IS TO SIT DOWN WITH A GROUP OF STROKE PATIENTS AND LISTEN TO THEM. They have very important information and insight to how a stroke is and how things are for them. For instance....a couple of the stroke patients "swore". I couldn't believe it. Well, to my amazement that is what comes out of their mouths by accident, there is nothing they can really do to prevent this. It's their channel of communication. I found it so unusual while I was at the stroke association to find this out. Another VERY important thing was someone told me that some stroke patients need to hear things in a "SLOW" manner. Talk slower. Sometimes stroke patients don't receive all the information properly if people talk to fast. ANOTHER VERY IMPORTANT thing......allow them to finish what they are saying. It is important to be patient and let them try to talk, it improves on their ability to convey themselves. In my mom's situation, she can repeat what we say but has cognitive issues and isn't fully able to say anything except "to go" and "yes" and "no" which are completely off. Which makes it difficult when people come around asking her something because she may or may not give the correct response. I have many people asking me the question "where does she want to go?" cause she says "to go" all the time. I explain that is the way she is able to speak but it isn't what she means. Anyhow, in a nutshell I wish you luck in learning everything you need to know about being a great caregiver and hope to see you back posting. Give your child a kiss and know that you are a great individual by being such a caring parent!!! :]
Comments
I've been a caregiver to my
I've been a caregiver to my husband with state 4 prostate cancer since january 2007. I now am at home with him all but a few hours a week' I'd say 12 hours. At times we have some very tender moments and at times we have some very tense moments due to frustration, confusion, and fear of the unknown. Is anyone out there having similar feelings? The lack of socialization and feelings of isolation can really get me down, plus hy husband is incredibly bored. TV is his only recreation, plus reading a few articles in the paper each day.
Spousal caregivers
Dear rspelhaug:
What you are going through is normal. Frustrating at times, but lots of spousal caregivers experience this.
Two points: First, you are _not_ responsible for entertaining your ill husband. You can make suggestions, but he has to make the choice to do something, or be bored. And believe me, both are choices.
Second, it will help you to have regular breaks for yourself... see the survey elsewhere on this site -- 54% of those caregivers answering allow almost no time for themselves. If your "12 hours" away from the home is completely taken up with doing household errands, that's not time for yourself. Break time means doing something you really like to do, not caregiving-related, either alone, or preferably, with friends or relatives. That's where you'll get your socializing.
I should know. I was a spousal caregiver for 29 years of our 31-year marriage, until my first wife died in 2004. Now I'm the President of the Well Spouse Association (http://wellspouse.org). Check out the site.
re: spousal caregivers
The advice from the president of the Well Spouse Association is good advice and deserves your attention. Click here to see what the Well Spouse Association offers, and check back at caringtoday.com and Caring Today magazine for an upcoming interview with this gentleman.
13 YEAR OLD BOY, SUPPORT FOLLOWING STROKES
Dad's reseach helps others to help boy with rare condition. You can read what our local newspaper wrote about the fight we had with the hospitals, doctors, school system,and all the others( PT, OT, Speech therapies, and the orthotic people). His web site is www.naturalremediessavedmyson.com. It has been a long 4 years now that our son has been through hell and back so many times, that if not for the all Almighty Creator he would be dead. The condition was called Primary Angiotiis Central Nervous System Vasculitis. In short his auto-immune system was destroying his viens in his brain. I've been reading your magazine ever since the summer of 2004 after they did his brain biospy. His doctor at the time was Dr. Peter Rueman with the Children's Hospital Medical Center of Akron, in the stste of Ohio. In his nearly 40 years of treating kids(pediatrics),has seen only one case at the beginning of his practice.It wasn't till his second or third stroke and after a brain biospy did we know for sure what our son had. PACNSV is a very rare condition that if it was 20 years ago he would have been dead by now. Once his diagnosis was confirmed by his brain biospy and the advise from Dr.Reuman, to search the internet for answers about his disease did we find an alterative way to help keep our son stroke and seizure free. Your little magazine has been of some help with our fight, but it is mostly about older persons then for what our son has, but again even though it more for the elderly it has helped with treating our son. I just wanted to thank all the people involved with this publication. Caring for people not just the elderly but all people would be of a great help to others who are having a hard time dealing with their own fight. Caregivers come into play with all persons of all ages. Again, thank for all your help through the years.
Micah's...ma & pa, Sue & Ken Lawson
Questions; Ma's e-mail susany3@neo.rr.com pa's e-mail klawson@neo.rr.com
rspelhaug, Hello. I am also
rspelhaug,
Hello. I am also a caregiver for my mother who had a severe stroke two and half years ago. My mother can't walk or talk and has some confussion due to her stroke. My father passed 10 months prior to her stroke. I can somewhat relate to your situation regarding isolation in some respects. I had maintained a very active lifestyle prior to my mom's stroke. I was a sale's representative and a captain of two volleyball teams and played tennis on the side, along with various other activities.
I'm not sure if your husband is bed bound? If so, there are a few activities for you both to do. My mom use to be bed bound and one nursing facility mentioned respite for her. Although, she is completely beyond what once was a bad situation (the nursing facilities had changed all her medications and even sadated her at one point - long stories). She is well beyond a cycle of "nursing care", or lackthereof, thank goodness.
What I have done to stay busy and active is:
-I take her outside and let her watch me as I work in the flower plants or garden.
-I take her to Michael's or Joanne Fabric's to pick out things for her to paint, stich or work on. (She only has her left hand to work with, and was right handed)
-The senior citizen center has activities, bingo and social events.
-If he is well enough to sit in a wheelchair, you could both volunteer your time together sorting things at a food and shelter place.
-church. We go to church and we also have church members come to our house for service.
-remodel or clean home. It can be affordable and inexpensive if you watch for sales on paint or whatever and just take your time. It will pay off in the long run.
-you have online services, which is a great place to interact with others. There are a few things for you both to enjoy: as a caregiver you could further your education by taking online college classes, interact on forums about your situation and meet new people and perhaps help others, use the internet to learn how to help yourself and perhaps help others, your husband could learn to use the internet to play free poker or free online games, enter reputable sweepstakes (which I've won stuff from nabisco, hersheys, mgm, caribou coffee, etc.) I've won from over 20 some reputable companies. As a caregiver, learn how to do a family tree online and research your ancestors. You can put together some ideas on scrapbooking online and then print pictures out or order them online and get your husband involved with helping putting them in the books and organizing them. Start a recipe book together with your husband and organize it together. Let him pick out recipes either from a book or online and together you both will have created something special together.
I know your situation is difficult but I'm sure your husband is angry with the cancer and he has no outlet. So, remember that rather than arguing through what may be some of his last days (or not?) that it is best to possibly agree in some fashion and walk away from the situation. Make sure you find a way to regroup and try to keep your husband occuppied as much as possible and you will be fine.
I just turned thirty seven and I've been a caregiver for my mom for two 1/2 years. She is a diabetic and needs insuline shots amoungst other caregiving needs; bathroom, showering and other things. During the time I was watching my mom, my sister moved back home and eventually needed to be cared for too. Due to my situation, I had to tell my sister that it wasn't possible for me to caregive to her as she wasn't able to walk, shower or other things either. They had moved her to a nursing facility when she ended up in the hospital. So, life can throw a few curveballs your way. I have taken day by day and have overcome some very big obstacles and foremost my mom has overcome many of her obstacles and is living a life that she feels a little bit in control of with her determination and vigar to do what she can.
klawson1954, I read your
klawson1954,
I read your post and I'm sorry to hear about your son and his diagnosis. I'm sure it was somewhat of a relief to understand what had triggered the strokes. A big part of understanding how to care for someone is learning about their diagnosis. I say that because a diagnosis is complicated and if you sometimes don't understand the way a stroke affects the patient it can be difficult as a caregiver to fully comprehend what or why things happen the way they do. Primarily with stroke patients due to the nature of how the brain works. I found the information on ischemic stroke & hemorrhagic stroke enriching as a caregiver. My mother has expressive asphasia (she is able to receive information but unable to properly covey it). She can't talk but we have our own way of communicating which works real well. I have had speach, occupational and physcial therapy for my mom for two years but they had discontinued it. I pushed it as long as I could and have worked with her too. Oddly, she can tell time....I tell her that we will be going to a store at 2:30 and she starts preparing to get ready around that time. She gets up like clockworth every single morning at 5:30 on the dot for two 1/2 years now. I don't particularily like 5:30 am but have adjusted. She seems to comprehend some things and sometimes reminds me if I forget things. Although, I see evidence that there are disconnections with her thought processes through other questions that I ask her. ONE VERY IMPORTANT THING IN THE UNDERSTANDING OF A STROKE IS TO SIT DOWN WITH A GROUP OF STROKE PATIENTS AND LISTEN TO THEM. They have very important information and insight to how a stroke is and how things are for them. For instance....a couple of the stroke patients "swore". I couldn't believe it. Well, to my amazement that is what comes out of their mouths by accident, there is nothing they can really do to prevent this. It's their channel of communication. I found it so unusual while I was at the stroke association to find this out. Another VERY important thing was someone told me that some stroke patients need to hear things in a "SLOW" manner. Talk slower. Sometimes stroke patients don't receive all the information properly if people talk to fast. ANOTHER VERY IMPORTANT thing......allow them to finish what they are saying. It is important to be patient and let them try to talk, it improves on their ability to convey themselves. In my mom's situation, she can repeat what we say but has cognitive issues and isn't fully able to say anything except "to go" and "yes" and "no" which are completely off. Which makes it difficult when people come around asking her something because she may or may not give the correct response. I have many people asking me the question "where does she want to go?" cause she says "to go" all the time. I explain that is the way she is able to speak but it isn't what she means. Anyhow, in a nutshell I wish you luck in learning everything you need to know about being a great caregiver and hope to see you back posting. Give your child a kiss and know that you are a great individual by being such a caring parent!!! :]