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Author	Topic: Family Caregivers
RobynInNJ Member Posts: 2 From: Registered: Sep 2000	posted 09-17-2000 07:19 PM quote: Originally posted by Carol T: How often does caring for a slowly dying parent also cause the death of a family? My mother has a progressively debilitating neurological disease that causes bizarre personality changes and severe motor disability. My sister cared for mother in her home for over two years. I have now had mother in my home for a year. My sister and I both work full time and are able to have 24/7 care. My sister and I are both committed to caring for mother yet we have very hard feelings about how that is accomplished. My sister was quite burned out and would not/could not consider placing mother in a facility either temporarily or permanently. Those were the most ferocious times. I was uneasy taking mother. My husband thought it unwise and set his limits that her care would be my responsbility. Taking mother into my home was layered on the last few years that were filled with a bout with cancer, a new marriage, a teenage daughter, 2 moves, and another bout with cancer and major surgery. Fortunately I am now cancer free. My first choice would be to keep mother at home. But how do I deal with being worn out, with being angry with my husband for setting limits he has every right to set, with regretting the last months with my high school senior were overshadowed by demands of mother, with being angry with my sister for telling me "We all die." when I expressed concern over my own health? How do I find peace that I am a good daughter and am providing quality of life for mother when I dread going home to constant demands. I feel guilty if I enjoy anything. Past enjoyments now take on the demeanor of obligations. Can anyone provide perspective or a path to some peace? [This message has been edited by Carol T (edited 09-11-2000).] I am so sorry that You're going through this...But you are extremely stressed out and have alot of anxiety..I took care of my Mom 24 hrs a day 7 days a week. My Mom passed last year of terminal pancreatic cancer. I had a brother who lived around the block from me but was hardley ever around and when he was he just caused grief for everyone and asking his wife to do anything was another catastrophy.. As for your husband, I can understand his quams but I also think he needs to be a little more open to what's going on with you and realize why you are doing this. One day the shoe could be on the foot and he will be looking for your support Would he be as understanding as you? Your anger is also normal and you shoudl try and put some of your guilt behind you for it..You are doing the best you can under the circumstances and noone can expect more than that.. I used to feel guilty too for even laughing when my mother lay in the next room dying but it's built in our nature and and we shouldn't feel guilty for living. After all if we didn't live who would take of the dying?. You need to find some way to vent your stress and frusterations. Even if it's as simple as going for a 5 min walk down the block each day and clearing your head to sitting in the park alone for a half an hour. You need to find ways to be able to have peace in your mind through this ordeal or it will endup destroying you along with your Mother. Maybe get involved in some support groups whether it be online or off it always helps to talk to others who understand. I was involved in support groups online and I wouldn't have made it through without them. I wish you the best of luck and GOD 's graces.. You can email me anytime Robyn
woodworth4 Member Posts: 2 From: Registered: Sep 2000	posted 09-24-2000 01:26 PM God Bless all you care givers...you are gods hands at work when he needs to be close to his people! I kept telling myself that all last year as I watched my 61 yr old mother who had battled cancer for 15years fall to a stroke that left her paralized on the leftside, unable to speak, swallow,walk, and unable to do her hand work that she so dearly loved. During test after the stroke they also found more brain tumors and cancer of the spine. I quit my job and went home to help my father take care of her 24 hour needs. My sisters helped as they could and my brother who lives far away sent money to keep my family going without my income. It was a learning experience for all of us but I was very lucky to have a husband who set no limits, and a 12 and 11 yr old who just wanted to help make grandmas life the best. I can really understand the combative problems but in moms case it was the need for pain relief which hospice gave her. Our local hospice saved our family and gave us hope. Isnt it funny that our goverment solves many problems each day but that the needs of caregivers is over looked. It would have cost the state (in the end) over 3,000 a month to take care of mom in a nursing home and all I really needed was about 6 or 7 hundred dollars a month to take care of her at home?????? Go figure! We all need to advocate for our loved ones because that may be us someday and our kids taking care of us. The days and nights were rough for those 9 months but in the end I was with mom and as I told her "Good night, I love you, have sweet dreams" she took her last breath. She was able to die at home just as she wanted and I was able to be there. How funny it is....she was there to help me into the world and I was there to help her into heaven. What a gift. For those needed respit help call your local Center for Independent Living and they can help with keeping your loved one as independent as they can be...that might just me Talking books to pass their time, a screen magnifier to help them watch tv, or services of respit connections for the caregiver. If you need more information on Centers for Independent Living send me an email at Woodworth4@hotmail.com I would love to help you out!
Ginnie Member Posts: 3 From: bradenton beach fl. 34217 Registered: Sep 2000	posted 09-25-2000 10:06 AM quote: Originally posted by Geri: [QUOTE]Originally posted by Alana: [b] [QUOTE]Originally posted by Geri: [b] We have been told, this summer that my husband has "Classic Advanced Stages of Alzheimer's disease." We have been floundering and fighting the medical profession for 2 years. In watching the program "On Our Own Terms" it occurs to me that Alzheimer's disease is a death sentence (along with other diseases one has no control over). Because no one can say these people have only 6 months to live we are denied hospice care and other care that could be of much help. These people are slowly dying and need the help while they are aware of what is going on, not so much when they are no longer aware. Just this year I was lucky enough to get 20 hours respite time. Up to now I have been sole caregiver to my husband. We know what we have been through and we know what is ahead. He wants to die at home and I support that BUT my mental and physical bodies are broken and we are now having to consider a nursing home because we have no support other than the 20 hours respite. Of that 20 hours respite I use 8-10 hours a month for someone to bathe him as I can no longer take a chance with my back. I have to save it for when he falls or absolutely cannot get out of or into bed on his own. He wears me out trying to get him comfortable. I am awake at night administering to him and during the day to answer the phone, doorbell, daily home chores, etc. This has taken its toll on both of us. I really wish people in this situation had more support and help. We don't have family willing to help and I am sure there are others in similar positions. We have had the same situation as DGCusack and only one friend stops by fairly regularly but is not available to give respite. I am so sorry you have no help. No church people to ask help from? My mom died last may at home. I wish everyone could. I was fortunate I had 2 sisters that helped me care for my mom. She had Alzheimers for 7 yrs and the last 3 were really tough. She was a sweet person through it all. I know having security and family around lessen their fears. We did get some community help in volunteers through Alzheimers Assoc. but it was lots of trips to Fla for my older sister and I, and a sister who stopped work to be the caregiver full time and we supported her. It took understanding husbands and my caregiver sister was divorced and didn't teach school the last year. I hope you find help. Hospice was with us the last month of her time. They were great. My older sister and i were round the clock the last 9 days. They were tough yet I am so thankful we were there holding her hand. Not being able to communicate was awful but when I see people in such pain, I don't know what is worse. I spoke to her as though she could hear me. It was wonderful and it was awful...... [/B][/QUOTE] Alana, Thanks for your words of encouragement. I choose to be here and really don't want to give up but my health is breaking down and I do need help. Hubby is 86 and a 32nd degree Mason but no help there. (See response to Lauren Jean's msg. to me.) [/B][/QUOTE]I know what you are going through. My mother is in hospice and Me and my 26 year old son took care of her up until last monday. I was worn out and getting sick. I have an auto immune disease. Hospice is great, but they do not stay the long hours of care giving. Church was great too, but no hands on care. All I did was run to do errands for her inbetween long hours of care giving. We had a night nurse, but still during the day I was worn out and coming home crabby and crying. We placed mom in a private facility. I still feel quilty that i couldn't do it. But this is best for our family. Ginnie

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