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  
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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.

3 Things I learned about family relationships when caregiving

March 18, 2008 by  
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When I first arrived to my aunt’s house after her first chemo, my cousin said, “Did I tell you how glad I am to see you?” She is a RN who works in a health care environment, not with patients. She had been taking care of Barb on her own. She had just lost her dad 11/2 months prior to that day. It was unexpected and just 2 weeks before her mom was diagnosed with cancer for the second time. No one had time to deal with the death of a husband and father. I am a strong, coach like person who sees what needs to be done and either does it or makes sure it gets done. My aunt and I were only 11 years apart and very close from the time we were kids. I worshiped her when I was growing up and she babysat me. I was carried on the shoulders of her husband all through the wedding, I saw her graduate from college, she came to the ceremony when I received my PhD. We talked weekly. But I did not know my cousins very well. I did not visit much when they were growing up so as much as Amy was glad to see me, she had no idea how the relationship would work out. After all, she was a nurse and Barb’s daughter. I was a niece and knew nothing about cancer. After the first week, the honeymoon was over.

My aunt looked to me for support, more than my cousin. Mostly because she did not want her daughter to quit her job and make taking care of her mom, her life. Also, my aunt knew that I would always do what was best for her, not what I needed for myself. But my aunt was not herself she had just lost her husband and had not dealt with it. She actually seemed like she wanted to be with him.  She and I had a telepathic understanding that she would die but we went along with the thought of getting better for the rest of the family. In just the first month, these are first three things I learned about the effect caregiving has on relationships between family members.

First, people become territorial. You spend all day with a person and all night hooked to them by a baby monitor and you become hyper vigilant and not able to give up your care. Meaning you are hovering over the person spelling you which makes them uncomfortable.

Second, everyone tries to hide their feelings so that the care receiver and others stay strong. Many times, I asked how my cousin was feeling and all I got was “how one would expect.” Instead of us all dealing with our frustration, fears, guilt, anger.

Third, the definition of good care by each family member is mediated by their experiences and their need to be needed.

These 3 things create conflicts because each person involved in the primary care of the person begins to take “ownership” of the care and due to the lack of open communication a tug of war exists that creates distress for the care receiver. I know that I am basing this on my experience but I would assume that this happens frequently because in our society we are called “whiners” when we vocalize our fears, frustrations, and ask for help. I could easily see this happening in situations involving caring for elderly parents. Has anyone experienced these situations?

Inevitable role of family caregiver

March 17, 2008 by  
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If you have parents, aunts, uncles, sons, daughters, a spouse, or a friend, you probably at some time will be either a primary caregiver or a secondary caregiver. Those of us who are in our 50’s are in what they call the “sandwich generation.” as explained on the Carestation Blog. We are sandwiched between taking care of our children or grandchildren and our aging parents or others in their generation. If you are a woman, you have a greater chance of becoming a primary caregiver according to statistics reported in a report on The Family Caregiver Alliance Site The statistics sited are numbers from a few years ago. With baby boomers like me reaching their late 50’s and my parents moving into their 80’s, those statistics cited will grow exponentially. Moreover, my sons will then be more likely to move into the role of primary caregiver for either myself or my parents. This means that not only are we responsible for researching how to get our own affairs in order, but also on providing good care for the ones we love and care for our selves. I did not do that the first time I was a primary caregiver, but I will as I move into the role of caring for my aging parents. How many of you were prepared?

Dog Days

March 15, 2008 by  
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I had a good day yesterday. One of the best since my aunt died. I drove 4 hours to agility lessons for my 2 younger dogs. We trained for 2 hours. The dogs did great. That made my month. But with the 15 lbs. I gained in my stomach while caregiving, I barely made it. I was huffing and puffing the whole time. Most of the 15 lbs. is in my stomach. Unless I tuck my shirt in no one can tell I gained the weight. Everyone that becomes a caregiver needs to make sure that they find ways to minimize the stress and frustration that comes naturally with the duties associated with primary caregiving. My doctor has told me that because I was so healthy prior to gaining the weight from stress that I should exercise and eat what I normally do. If I can’t seem to get it off, then I must go back and see him. He and I both know that I still have a mild case of depression but if I can pick myself up I will be OK. It makes me so sad to know that around 48 million people, according to the AARP Magazine (Dec2007), could be a victim because they gave of themselves.

My aunt’s dignity

March 13, 2008 by  
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When I first got up to my aunt’s house, she was unable to get into her bed without help getting her legs up and then scooting and rolling her over on her side. She appreciated the help but you could see in her eyes that she felt helpless and frustrated. She always apologized for the effort it took to get her to bed. We had to put a platform so she could sit on the bed to help because she weighed over 180. She was the rock for the family and she could not even lay on the couch without help at times. At that point, she believed she was going to get better so I felt her self worth was as intact as possible. But as the months went by, her body language, silence, and unsmiling eyes said it all. I remember clearly when we went to the Social Security office to find out why she was not receiving her husband’s survivor benefits. She was in the wheelchair with me pushing, she did not have any hair, and she looked pretty bad. The woman looked down at her from the counter and called her mister even though the woman had her Social Security card in her hand. I corrected her. From there we had to go to the military base to an office to discuss the same situation. The man without any thought told her that they had her as dead. I wanted to punch him. That was the last time we ever worked on that problem. I mean what must it have felt like to know you are probably dying, you look like your dying, and this gentleman bluntly said “our records have you as dead.” She responded, ” Obviously I not dead yet.” These are just a few examples of not being cognizant of how we must be the ones to help maintain the dignity of our family members we care for. There is a great article in the BMJ 2007, July on “Dignity conserving care.” Let me know what you think.

Nutrition for cancer patients

March 11, 2008 by  
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One of the hardest things for me as a caregiver was trying to make sure my aunt ate and drank. They thought that the cancer in her abdomen was metastasized breast cancer. Hence she was always feeling bloated, full, and extremely uncomfortable. It was not conducive to getting her to eat and add to the discomfort. She also had the usual problems such as loss of taste, reactions to the chemo leading to occasional vomiting and diarrhea. At first she was on a special diet because of her reaction to chemo. That eliminated most of her favorite foods. I would do everything I could to find something that was on the list and that she would eat. I would let her cheat if she would eat most of what she was supposed to. I felt like a drill Sargent getting her to drink enough water.

I am somewhat knowledgeable about nutrition so I had a pretty good idea what she should eat. One day she told me that she wished she had eaten better over the years. But her tastes were not necessarily associated what was good for her with her disease. I would have to say I felt guilty about being a nag about food and drink. It was one of the most difficult parts of the role as caregiver. On one hand, you see her in pain and discomfort and want to just let her eat what she wants. On the other hand, you hope you can help her to develop a meal plan that helps maintain her strength so she can fight the disease. I would go to the grocery store and go down Every aisle to find things that she normally liked or we had not tried. I remember toward the end when she was drinking protein based drinks, I bought 5 or 6 kinds and we had taste tests. I still have a Boost sitting on my counter that I accidentally brought home.

For those of you that are dealing with a similar situation, here is a good article on nutrition for cancer patients on Caregiver.com; Today’s Caregiver Magazine. Not only do we have to educate ourselves about how to maintain the health of our family members through nutrition, we also have to understand the relationship between food and emotions; ours and theirs. That will be another discussion:)

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