Guest guest Posted October 27, 2002 Report Share Posted October 27, 2002 Marcel, Don't worry about the long posts or sharing what you and your family is going through. The people on this list are very compassionate and knowledgeable. Just about everyone here has either gone through it or is going through it. We all need a safe outlet to let it all out. All too often, our family and friends don't want to discuss it because it is too real. That is what this online family is for. I'll be praying for you and your family and I know that you all will be able to get through whatever the future will bring. Hugs and Warm Fuzzies, Deborah aka Tenacity Personal website & photo's http://www.pdhangout.com http://community.webshots.com/user/tenacitywins _________________________________________________________________ Unlimited Internet access -- and 2 months free! Try MSN. http://resourcecenter.msn.com/access/plans/2monthsfree.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2002 Report Share Posted October 27, 2002 Marcel, Don't worry about the long posts or sharing what you and your family is going through. The people on this list are very compassionate and knowledgeable. Just about everyone here has either gone through it or is going through it. We all need a safe outlet to let it all out. All too often, our family and friends don't want to discuss it because it is too real. That is what this online family is for. I'll be praying for you and your family and I know that you all will be able to get through whatever the future will bring. Hugs and Warm Fuzzies, Deborah aka Tenacity Personal website & photo's http://www.pdhangout.com http://community.webshots.com/user/tenacitywins _________________________________________________________________ Unlimited Internet access -- and 2 months free! Try MSN. http://resourcecenter.msn.com/access/plans/2monthsfree.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2002 Report Share Posted October 28, 2002 Originally written in March 2001 This message is too long. I apologize before you begin. I like the others are very sorry that you must be with us on this list, but I can tell you that I have learned much from this group. There are many people here with different experiences and different opinions. I am a night person, so I have spent many a night reading these messages. In many cases, I have been able to see that something going on in our life was similar to events in the lives of others on this list and be relieved to just know that others are having similar experiences. My husband's symptoms have advanced fairly rapidly following his diagnosis, in 1998. In fact, the only way we can move him now is with a lift attached to the rafters of our home and a power wheel chair. We know that he had many of the symptoms for years prior to that diagnosis, though. We certainly are seeing that no two people are the same. I am sending you info about our family, but do not take us as the gospel. Who knows whether we are average or not. My husband is the MSA patient and I am the care giver (Well, sometimes I wonder, if that is really true.). I am responding, because I see your need and that of your folks from a different perspective than you might. I hope my thoughts will be of help to you. I am 63 and my husband is to be 70 in April. Our sons are between 36-41 who are very caring, but also have very demanding jobs, plus wonderful families. In addition (but thank goodness) they want to spend lots of time with their own children/wives. We want them to do so. So we can see the strong " PULL " of emotions, physical needs, guidance and so on that comes from the parents who were 'smacked in the face with this illness' and all of the circumstances that go with it, plus the needs of our sons with growing, but young families. Our sons will do anything for us, but we do hate to ask them. I will say that in past few months, I am less hesitant to ask. I will include some ideas that I have written previously for others. I hope they will help you. My husband and I may be a little more/less needy that other families, because I had major coronary problems within the year following my husband's diagnosis (two heart attacks, angioplasty and finally four bypasses.Now congestive heart failure) I do not think that my health problems had anything to do with my husband's diagnosis. My problems are genetically oriented, but my weakened health has probably made me some more dependent upon my children than others may be. I would suggest to you. Don't leave it to your parent to tell you anything. He/she may want to but be unable emotionally/intellectually to tell/ask. 1. This is the most important gift that you can ever give your parents, but it takes time and commitment. Don't just say, " I love you " . Show them your love. You may have to make major changes is your lives today, but remember they made major changes in their lives when you needed them as an infant. That may be exactly what your ill parent has become, an infant. 2. No matter where you live or where they live, go to your mom and dad. Stay for a period of time. This trip leave your children at home. Neither you nor your parents need the distraction of children. Don't just drop in for an hour. Stay long enough to see what really is going on. Take things in your own hands, but remember they have a routine going. It will take time to change old habits. Some of those very things that you disliked the most in your home when you were a child may be the very things that they want to hold on to now. Remember it is their home, it is their life. 3. Make it a point to go with your parents to the doctor. It always helps to have more than one set of ears. Doctor's offices can be very stressful. Even though my husband and I are both of sound mind (we think), we sometimes hear two different things when we are at the doctor's. This happens for either one or both of us. If it is not possible for you to actually go with them, get written permission from your parents for the doctor to meet with you to discuss your parent's condition. 4. Make arrangements for you or your spouse to help your healthy parent care for your ill parent on a regular basis. If that is impossible find someone to help on a regular basis, whether they think they want the help or not. Find someone to clean house, cook a few meals, sit while your well parent runs errands, etc. Be sure it is going to happen week end and week out. 5. The most important thing your healthy parent needs is your support and love. He/she is already grieving for the loss of his/her ill spouse (as she/he has known him/her), the loss of his/her own life (as he/she knew it), and many other aspects of their life together. Your healthy parent may well be in a psychological shock without being able to recognize it. She/he may need some medical care her/himself. 6. Put all of your energies to loving your parents and showing that love to them in actions and not just words. Do all you can to make their life comfortable. 7. A young friend who was my employee prior to my retirement is dealing with her own parents. The mother has Parkinsons. The doctor has said to the dad that he must get away. His prescription for the spouse is to have outside help at least 8 hours a day, one weekend a month, and one week every two months. I¹m not sure that either my husband or I would ever be willing to this much time away from each other, but I am seeing the need for help. My thoughts come from the fact that the members of this list are mostly caretakers and patients. In most cases, we are not medical professionals. We all care for each other, but we also see that the illness is different in each case. I will be happy to discuss other issues if you like. Please know that I care for you and your parents. My thoughts and prayers are with all of our families each day. If you live anywhere close, I would be happy to meet with you or your parents. Best wishes to you on your journey. Marilyn in TN October 2002 I would suggest that you act as quickly as possible. When I wrote the above in March 2001,I thought that we had years of time together. Little did I realize that my husband's life would be gone in a blink of an eye. Enjoy every day/minute with your parents as quiclly as you can. This illness may allow the ill parent to last 5-20 years, but it can also take them too quickly. " Speedy " 1932-2002 Marilyn in TN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2002 Report Share Posted October 28, 2002 Originally written in March 2001 This message is too long. I apologize before you begin. I like the others are very sorry that you must be with us on this list, but I can tell you that I have learned much from this group. There are many people here with different experiences and different opinions. I am a night person, so I have spent many a night reading these messages. In many cases, I have been able to see that something going on in our life was similar to events in the lives of others on this list and be relieved to just know that others are having similar experiences. My husband's symptoms have advanced fairly rapidly following his diagnosis, in 1998. In fact, the only way we can move him now is with a lift attached to the rafters of our home and a power wheel chair. We know that he had many of the symptoms for years prior to that diagnosis, though. We certainly are seeing that no two people are the same. I am sending you info about our family, but do not take us as the gospel. Who knows whether we are average or not. My husband is the MSA patient and I am the care giver (Well, sometimes I wonder, if that is really true.). I am responding, because I see your need and that of your folks from a different perspective than you might. I hope my thoughts will be of help to you. I am 63 and my husband is to be 70 in April. Our sons are between 36-41 who are very caring, but also have very demanding jobs, plus wonderful families. In addition (but thank goodness) they want to spend lots of time with their own children/wives. We want them to do so. So we can see the strong " PULL " of emotions, physical needs, guidance and so on that comes from the parents who were 'smacked in the face with this illness' and all of the circumstances that go with it, plus the needs of our sons with growing, but young families. Our sons will do anything for us, but we do hate to ask them. I will say that in past few months, I am less hesitant to ask. I will include some ideas that I have written previously for others. I hope they will help you. My husband and I may be a little more/less needy that other families, because I had major coronary problems within the year following my husband's diagnosis (two heart attacks, angioplasty and finally four bypasses.Now congestive heart failure) I do not think that my health problems had anything to do with my husband's diagnosis. My problems are genetically oriented, but my weakened health has probably made me some more dependent upon my children than others may be. I would suggest to you. Don't leave it to your parent to tell you anything. He/she may want to but be unable emotionally/intellectually to tell/ask. 1. This is the most important gift that you can ever give your parents, but it takes time and commitment. Don't just say, " I love you " . Show them your love. You may have to make major changes is your lives today, but remember they made major changes in their lives when you needed them as an infant. That may be exactly what your ill parent has become, an infant. 2. No matter where you live or where they live, go to your mom and dad. Stay for a period of time. This trip leave your children at home. Neither you nor your parents need the distraction of children. Don't just drop in for an hour. Stay long enough to see what really is going on. Take things in your own hands, but remember they have a routine going. It will take time to change old habits. Some of those very things that you disliked the most in your home when you were a child may be the very things that they want to hold on to now. Remember it is their home, it is their life. 3. Make it a point to go with your parents to the doctor. It always helps to have more than one set of ears. Doctor's offices can be very stressful. Even though my husband and I are both of sound mind (we think), we sometimes hear two different things when we are at the doctor's. This happens for either one or both of us. If it is not possible for you to actually go with them, get written permission from your parents for the doctor to meet with you to discuss your parent's condition. 4. Make arrangements for you or your spouse to help your healthy parent care for your ill parent on a regular basis. If that is impossible find someone to help on a regular basis, whether they think they want the help or not. Find someone to clean house, cook a few meals, sit while your well parent runs errands, etc. Be sure it is going to happen week end and week out. 5. The most important thing your healthy parent needs is your support and love. He/she is already grieving for the loss of his/her ill spouse (as she/he has known him/her), the loss of his/her own life (as he/she knew it), and many other aspects of their life together. Your healthy parent may well be in a psychological shock without being able to recognize it. She/he may need some medical care her/himself. 6. Put all of your energies to loving your parents and showing that love to them in actions and not just words. Do all you can to make their life comfortable. 7. A young friend who was my employee prior to my retirement is dealing with her own parents. The mother has Parkinsons. The doctor has said to the dad that he must get away. His prescription for the spouse is to have outside help at least 8 hours a day, one weekend a month, and one week every two months. I¹m not sure that either my husband or I would ever be willing to this much time away from each other, but I am seeing the need for help. My thoughts come from the fact that the members of this list are mostly caretakers and patients. In most cases, we are not medical professionals. We all care for each other, but we also see that the illness is different in each case. I will be happy to discuss other issues if you like. Please know that I care for you and your parents. My thoughts and prayers are with all of our families each day. If you live anywhere close, I would be happy to meet with you or your parents. Best wishes to you on your journey. Marilyn in TN October 2002 I would suggest that you act as quickly as possible. When I wrote the above in March 2001,I thought that we had years of time together. Little did I realize that my husband's life would be gone in a blink of an eye. Enjoy every day/minute with your parents as quiclly as you can. This illness may allow the ill parent to last 5-20 years, but it can also take them too quickly. " Speedy " 1932-2002 Marilyn in TN Quote Link to comment Share on other sites More sharing options...
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