Potential reduction in Hospice reimbursement

May 5, 2008 by  
Filed under Archives, News

There is a possibility that Medicare will phase out an annual adjustment to the Hospice wage index in the next 3 years. I know that many of you have been blessed to receive services from Hospice. Read the response of the National Hospice and Palliative Care Organization to the Bush Administration’s proposal to reduce funds to Hospice Centers all over the U.S. Get in touch with your representatives from the Senate and Congress and let them know that you are against this proposal. For those of you that will be caregivers of terminally ill people in the future, you too need to protest because from my experience with Hospice it will be the best thing that happens to you and yours.

Baby boomers our actions will affect our loved ones

April 28, 2008 by  
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My 80 year old father had a heart attack last Saturday. He had angioplasty and then acted as though nothing happened. It was like he had some illness and it got cured. He is overweight, fairly immobile from lack of exercise, overeating, and he does not seem to get it. It is not so much that he does not get that he could have died. What bothers me is that what he does from now on will determine my fate as a caregiver as he and my mother age. They have not exercised for years and years. They are both close to or over 200lbs. They both have bad backs and attitudes. They are in denial about their age and so they have not had those discussions with my brother and I that are necessary to carry out their wishes. We have no idea who has the medical power of attorney. We have no idea what their dying wishes are about a funeral or cremation. I know they want to be as independent as possible. I know they do not want to be a burden as they age. But, unless things change, they will leave us in a position where we will have to guess and maybe argue over what we think they would want.

Those of us in our 50’s and 60’s owe it to the ones we love to try and take care of ourselves so that they do not have to be caregivers for us because we have not taken care of ourselves. We owe it to them to make a will or trust and make sure that those executing such documents know our wishes so they do not have to guess. My parents will need care because they have not taken care of themselves. They will be of sound mind but not be able to move around, clean, or take care of one another because they are both in bad physical health. I will take care of them when they need it. I will not resent it but I will make sure that my sons or other loved ones do not have to take care of me because I did not consider that my actions now and in the future will have a major effect on those I love in the years to come.

Knowledge of hospice

April 25, 2008 by  
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My neighbor’s father died last week. He never came home from his last trip to the hopital. He went to a home and then was taken back to the hospital to be put on morphine for his last few days. Mike had kept him at home for as long as he could. His father told him to keep him at home until his death. But it was too hard not to call the ambulance one last time. He told me that 5 years before they called and it saved his life for 5 more years, so I am guessing that he was “hoping” He was in his mid-eighties. As he spoke to me teary eyed II wondered, but did not ask, because his father had just died that day, “why didn’t they use hospice?” They could have provided that last week of care and his father and Mike would have had their wish come true. He regretted that his father, like his mother, years ago had to be in the hospital and not at home. After seeing the wonderful people who came to enroll my aunt into hospice, I would have nothing different for myself or those I love if possible. Mike is a hard working, blue collar, lower middle class guy who may not have understood about hospice or never really got all the nformation about how to go about getting into hospice. Everyone should check into all of their options when approaching death. From all the services I learned about for my aunt and the kindness of the people I met, I would rather have then guiding my caregiver than makiing my family endure the trip to the hospital if at all possible.

Joys of caregiving

April 8, 2008 by  
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I knew I was losing my professor position when my aunt told me that she was diagnosed with cancer again. She had just lost her husband after he did not recover from a surgery a few weeks before she found out. There was no thought about how I was going to get back and forth between CA and WA. My life had revolved around teaching and my dogs. I never thought about how I was going to deal with the dogs. My aunt did not have a yard. I just knew that I wanted to make sure that my aunt had someone to talk to, someone to do her yard that loved that task as much as she did, someone who knew her likes, dislikes, and demons.

We were always exchanging tips about gardening. We both loved our riding lawnmowers. That was one of the things she lamented about. She got a brand new riding lawnmower just a month before she began feeling bad. She would point out that I had more hours on it than she. One of my joys was to make sure that her yard was always kept up. She could look out the window and see could still see the results of her 4 years of labor on a 4 acre piece of land. With my cousins, we even did some work she wanted to do in the future so we could discuss the future. Even though, I knew; she knew. But we never discussed her dying directly. We just talked about how others in the family were not getting how serious it was.

It made me happy that she did not have to feel guilty because I had to take off work. I did not have any. One of the biggest joys for me was that I could pay her back for her love, respect, and friendship that she had shown me all my life. She also knew that I could take her negativity, her hours of silence, and her frustrations because I knew her so well. I knew it wasn’t her. It was the disease. And as hard as it was and it has been, my biggest joy is that she died at home with family on her terms, not with strangers or in the hospital.

Tax time for caregivers

April 7, 2008 by  
Filed under Archives, News

I was working on my taxes last week. As I was going over all of my expenses, I realized I spent thousands of dollars on gas, food, and necessities while caring for my aunt. It made me think about family members who care for someone for longer than 8 months. I asked my tax person if people can deduct those costs. I know my cousin also spent a good deal of her own money. I mean really what do you say to the person you are caring for, “could you give me $50 for groceries?” Did I expect to be reimbursed, No!! But it seems to me that the statistics show that family caregivers provide an economic service to society that can and usually does lead to more medical costs for the caregiver and a loss of wages or retirement because of work time missed or leaving a position. As this USA Today article demonstrates Congress and Bush are not very interested in helping the caregiver maintain their health and financial status unless you provide in-home care. It is about time that our representatives acknowledged that without the help of family caregivers, many of those being cared for would be under the care of the taxpayer.

Discussion with neighbor caring for elderly father

March 31, 2008 by  
Filed under Archives, News

Two days ago the paramedics came and took my neighbor’s father to the hospital. I don’t know exactly how long he has been caring for him in his home. But I know it has been at least for 4 years. I know he has a professional caregiver, Mary, come 5 days a week. She stops and talks to me on her way to the bus stop while I am doing my gardening. I know he put a new air conditioner in his home just for his father last summer because he has breathing problems. He works a blue collar job so I suspect that it is not only a physical and emotional drain on him, but also a financial one. I went over to ask about his father. He went on to tell me that he probably had a stroke and now has an enlarged prostrate. When I asked when he would come home, he said they did not know if he was going to go to rehab or …his voice trailed off. I said it is a difficult decision isn’t it? Then I told him why I had not been home all summer. I explained that I was recuperating from my brief stint as a primary caregiver. We talked about the lack of sleep. His father sleeps in the same room with him so that he knows how he is doing and that he won’t get up in the night. I thought sleeping with a baby monitor was bad. But with a family member who has trouble breathing and probably keeps you awake all night. Mike seemed comforted that I understood. He was getting emotional. Then he said, “My parents always said they never wanted to go to one of those places.” All I could say was ” I don’t think anyone does.”  I told him I knew how much it takes out of one. His response, “So much in all aspects.” Again he was getting emotional and other neighbors were out around us. I told him that at this point he had to do what was best for him now. My heart went out to him. You could tell he did not talk to people about how hard it was on him. He did not tell people that it was getting to him. We had made a connection that only people in the Caregiverunderground can. I left telling him that he could always come over and talk to me anytime he wanted. I believe that we have bonded, not as neighbors, but as family caregivers. We need to reach out to each other.

Breast cancer rant

March 29, 2008 by  
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I sat on the 4th floor in the oncology ward wondering why so many of the women like my aunt were not diagnosed sooner. My cousin died at 50 of breast cancer leaving 2 boys one in high school and one in his first year of college. With all of the technology we have in this country, why can’t we develop a technique to effectively see through the tissues of women’s breasts. We have lasers that can see through concrete in war but we can’t develop a technique to see through breast tissue?  Yes more women are surviving breast cancer but if we could detect it sooner many more would. Is it that women get the short end of the stick when it comes to prevention and treatment of their diseases. I mean after all when viagra came out most insurance companies covered it. Yet, many insurance companies did not cover birth control pills. OK let’s think about this. We will give pills to men so they can have sex, but not cover women so they won’t have an unwanted pregnancy with all those men having sex because of viagra. For a long while, we did not research symptoms that women exhibit before a heart attack.  Now we know they have different symptoms than men. But not until we finally did research on women. At least in the case of my aunt, the effects of the treatment were many times worse than the cancer. We can build technology that does almost anything but:: not one that can effectively see through tissue. I am angry. I believe that if more men got breast cancer, we would see the technology developed to catch breast cancer sooner. Maybe I wrong but I don’t think so. The most compassionate doctor I met during my hours and hours of being in the hospital as my aunt’s caregiver was a female urologist. She was not only compassionate, but she was willing to have an honest discussion about making hard quality of life decisions. My aunt’s doctor never, until the last month, broached the subject of stopping treatment because it was harder on her body that the cancer. He never discussed the prognosis for the 8 months I was with her until 4 days before she died  when he told her it was time to check about hospice. Too many women are not being diagnosed with breast cancer soon enough. I know that after watching what my aunt went through to live mainly for us, I will never complain again about hard times. But I also know that as a women and a person who has lost 2 family members to breast cancer in 3 years, I want to know why we can’t use some form of the laser technology used to see through war bunkers to identify aspects of breast tissue more effectively. Is there anyone else out there that feels the same way?

Caregiver sitting can lead to low back pain

March 24, 2008 by  
Filed under Archives, News

I am back. Yea. For the first time since my aunt died and drove my last 14 hour trip from WA, I believe I am beating my depression and fatigue. Over the last 3 days, I have worked in my garden for 5-6 hour stints. I have gotten up by 8:00am every morning. I haven’t felt this alive for 10 months. But after crawling on my hands and knees putting 15 lbs of organic fertilizer on my hedges, roses, and other plants, I can barely straighten up. Prior to my primary caregiving where I spent most of my time sitting with my aunt or driving 14 hours one way, if I had done the same type of work I would have had some back pain the next morning but it would subside by the afternoon. This is not going away. As a physical education professor, I know that the sitting too much, the lifting, twisting, and turning associated with caregiving could impact muscle tightness, posture leading to low back pain. But stress can also lead to low pack pain as illustrated in an article in Family of Love Ones Magazine.com. The Revolution Health Website provides suggestions for ways to minimize the impact of the sitting, lifting, and twisting one does while caregiving. Another good site that gives specific ways to lift, move, and transport your care receiver is that of Changi Hospital. I highly recommend that during your caregiving hours you practice the following guidelines of Spine Universe. After reading all of the suggestions, you might say, “I don’t have time. I don’t think about it.” But if you are in pain, you will not be able to be as effective in helping your care receiver move about, nor will you will be able to maintain a positive upbeat attitude when trying to shore up the emotions of your care receiver. And as I have found out, after you are done caregiving, you may be unable to handle your everyday chores and enjoy those things you love to do like garden, hike, pickup your children, grandchildren, or just sit and watch the sunset without chronic pain. Besides the chiropractor and massage therapist, I am going to consult with a pilates instructor who is trained as a physical therapist. Wish me luck. I still want to climb Mt Rainier in August and right now I can barely get off the couch. Help others and let us know how you have managed your back pain. But hey, I am making my way back emotionally. That is a great start. Just in time to start moving into the role of caring for my aging parents. I will be much more prepared this time.

Health benefits of pets to caregiver and care receiver

March 22, 2008 by  
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If I had not had my 4 border collies with me most of the time I was caregiving, I would be in worse shape than I am now. Even though many times, I only saw them to feed them and play ball once a day while caring for my aunt, they provided me with a sense of relief. They obviously needed me to feed them but then all they wanted to do was give love to me. Even when my youngest ate a hat or chewed the seat belts because of being left alone, it was a relief to laugh and forgive because I felt that it was my fault for leaving them alone. Yet, I knew they would rather see me briefly 2 or 3 times a day than stay in the kennel. My aunt loved seeing them through the window trying to come in and sometimes I would let them in to visit. She was an animal lover but her late husband did not allow animals in the house so she did not get the manx cat that she had wanted. My dogs and my cousin’s St. Bernard that slept in the house when she was there definitely perked my aunt up. Both my cousin and I needed our dogs to mediate the stress and frustration that surrounded us as we lovingly, with all of our heart, cared for my aunt.

My aunt got well enough to be on her own for about 3 weeks. She was frustrated and felt as though we were watching her like hawks. I decided that to bring some dignity into her life that we had to let her be on her own relative to the previous 4 months. We had been with her 24/7. We were now only going to check on her and let her drive when she felt strong enough. But I was worried about her being lonely. She had lost her husband just 2 weeks after the unexpected death of her husband. So one of my cousins and I searched for a manx kitten to keep her company. We knew my aunt would be mad because her prognosis was still unknown. But we also knew the kitten would keep her mind on something other than her illness. Squeeaky was way more kitten than we all expected. She definitely kept my aunt on her toes and gave her something to talk to us all about when we would check on her via phone or visit. I remember within a week of my leaving Washington after Squeeaky became the primary caregiver, my cousin called to say that when she visited my aunt laughed out loud for the first time in 9 months. Was I concerned that my aunt could not take on the responsibility of caring for the cat? Yes, so I bought an automatic litter cleaner, a circulating waterer, enough cat food for months, and I knew my cousin had to visit every day to change my aunt’s bandages. We believed that the benefits of having Squeeaky as a caregiver certainly outweighed the problems associated with the partnership.

Care for the caregiver

March 20, 2008 by  
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In the last week, I have been to the acupuncturist, the massage therapist, and the chiropractor. My body has been sore and stiff since I got back in late December after my aunt died. I drove back and forth between CA and Washington more times than I can count. I sat and sat so that I could be available whenever my aunt would need me. Prior to caring for her, I had been training for an attempt at climbing Mt. Rainier. I left her a few times and did the treadmill in Sept. In May and June, I spent hours trying to keep up with her yard work while she was able to be alone. I know from my research since I finished my stint as a primary caregiver that the sitting, lack of sleep, stress, and poor nutrition are responsible for my problems. So not only have I gained weight, been extremely fatigued, and probably a bit depressed, my body is unusually tight and sore. I have found a great tool for those of you engaged in caregiving at the present time. It is a Caregiver Self Assessment Tool put out by the AMA. I highly recommend that you download it and keep it with you. If you know that you are about to start duties as a caregiver, I recommend that you use it early and manage your health and well being much better that I did.

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