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I took care of my mom in my home for over two years. My mother died Nov 4th with me by her side. I stroked her hair, said prayers out loud, told her it was okay to let go, and sang the songs she always sang to us as lullabyes. I would not change any of that. She lived in my home and home health workers and helpers would come and go all day long. Now the house is way too quiet. Since she lived here, there are many, many things that remind me of her and set me off to sobbing. I am still trying to get in insurance payments and pay off any outstanding debt before splitting any leftover money. There is not much left because it was ALL spent on my mother's care and to make her comfortable. My sister, who came once in two years to visit, is claiming I stole the money. My younger sister lives out of the country and even though I have written several letters informing her of our mom's death, I have not gotten one response. I can't call her, she went deaf while waiting to see a doctor in that country's wonderful government health care system. I have lost all of my family and wish I could feel my mother's arms around me again. If you are able, take all the hugs you can, they won't be there forever. How do you get over this? I have had people say "Just be happy." I wish I knew how!

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If he can't do any sort of exercise, including walking, I would suggest trying to get him on a transplant list. He is young enough to qualify.
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Appeal on grounds of compassionate need to your medicare, and your private insurance if you have it. It takes about 9 appeals before you get a yes.
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Cardiologist can't help--Medicare rules. I've tried to get him to work out some, even bought an elliptical with a heart monitor on it. He's afraid to do it without the nurses. He really should be monitored while exercising,
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That is terrible that they won't pay any longer! Have you tried getting your cardiologist to write another prescription?

In the meantime, can he do any of the cardiac exercises at home that he was doing at rehab? Just because he's not going to rehab doesn't mean he should be sitting around doing nothing. The more exercise he can do, the better. His breathing will tell him how much to do.
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equillot, My husband is 59 years old now. He used to go to cardiac rehab religiously, but he's not allowed to go anymore. It seems that medicare and insurance companies pay more for someone recently ill. We were paying for his continuing to go ourselves, out of pocket, and I guess that wasn't enough. Just one word for those who are not medical professionals and don't know what to watch for....we missed the biggest sign of all for conjestive heart failure...if your loved one can't lie down, fluid fills up and maybe they think it is a cold, don't wait! Take them to a good doctor and have their heart checked.
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terrim,

What is your deal? "You didn't dump her off with strangers in a nursing home?"

Judgmental much? Everyone's situation is different. Try to understand that before you make such caustic comments.
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I am so sorry! Allow yourself to feel the grief. You loved her and were a wonderful daughter who did just the right thing for her. You have no cause for regrets. You didn't dump her off on strangers in a nursing home and you were the light of her life right to the end. What a great daughter you were!!! Take the time to grieve. Tell your sister that you paid to care for your mother and ask her if she would care to reimburse you for doing her share of the work and expense. There isn't any way to just be happy. You won't be happy for a long time but it will gradually get better.
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I wish you my sincere sympathy - you were a wonderful daughter and you are so fotunate that you had such a loving relationship with your mother. Remember all that you had and try to build new relationships with friends. You deserve to concentrate on your own future happiness now. Perhaps you could join a bereavement group - there will be others there who will understand your grief and loss. God bless you.
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How old is your husband now? I know many people with cardiomyopathy go on the transplant list.

My EF was down to 20% at one point. Now it is normal, and my latest cardiologist told me I was "cured" and that I should "treasure this" - which I do. I know I am one of the lucky ones. I lived in fear for years, as you and your husband are doing now. I read all the statistics that said I didn't have more than 5 years, and here I am, 11 years later, healthy. Keep doing what your doctor says to do, don't read the doom and gloom on the internet, keep as much weight off as possible, keep a low sodium diet, no smoking, do as much exercise as possible (even walking out to the mailbox if that's all he can do), and hopefully you'll have lots of years in front of you. Hugs.
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In the natural order of things, the majority of us lose our parents. (I think it is particularly sad for parents to lose a child.) About half of all married people lose a spouse.

Death and loss is a universal experience. But as a recent widow I can sure tell you that it can sometimes feel like you are the only one in the world with this pain. It helps to remind myself that others go through this and not only survive but eventually thrive. I will, too.

I am at an age where most of my friends have had at least one parent die. One was especially close to her father and remembers well the pain of his loss. I find spending some time with her is calming. She doesn't tell me to "snap out of it."

One of my grandmothers died more than 30 years ago, in her late 90s. I still think of her often. When I do I am glad that she was/is a part of my life rather than sad that she died. I think I am moving in that direction regarding my husband, too. I'm not forcing it... I'm just letting it happen. I am glad he was a part of my life. Sometimes the pain that he is gone is intense. I accept that, and trust that the gladness will eventually be the major feeling.

Hugs to you. Be patient with yourself, and give yourself time to grieve and time to heal.
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Five months isn't long enough to address grief and 'just be happy'. Knowing you were there for Mom, that she could be at home where you could oversee her care, that she's free of the indignities and pains of a deteriorated body - those are a few things to be happy about. Those things can soften the edges of your grief.

Regrouping - reorganizing your life - takes time and cannot be done while bogged down with paperwork. Before you became a caregiver, what filled your days? Can you return to those activities? My mom cared for my dad for several years before he died last October. Before and through those years she had her voluntary ministry to bolster her. She also did gardening and worked with a volunteer construction group. Now she is increasing her time with those activities - it still feels odd, no longer being a caregiver, but she can cherish her husband's memory and be engaged in work that gives meaning to her life and helps others.
Perhaps you can find meaningful volunteer work as your husband's health allows. Support is invaluable so network with others, caregivers and mourners, so you know you're not alone. If you have friends who 'stick closer than a sibling', cherish them. Without fail those who aren't there for their parent will find a reason ($$$) to turn on the one child who was there through it all. Forgive them in the sense of giving up the need to make them responsive to your loss. It will only slow your progress to starting a new life. Cherish your friends who care for you and are there for that journey. See a doctor, get a thorough physical. Check on your own health so you can see what's next in your life and have the energy and strength to go there.

How Can I Live with My Grief? is a section in a lovely brochure When Someone You Love Dies. It has helped many cope with the grieving process.
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equillot: yes, cardiomyopathy. But his doctor treated him for a cold for so long, he finally went into conjestive heart failure. His heart had stopped by the time the ambulance got him to the hospital. They were able to shock him back. Atrial fib too.Ejection fraction very low. His cardiologist told him he was his sickest patient and he told me that he'd be lucky to live another five years. We fired that doctor, started going to the Cleveland Clinic. Now in TN so go to Vanderbilt. It's been seven years now and we are praying for many more.
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Also, I assume your husband has cardiomyopathy? I also caught a virus and was diagnosed with cardiomyopathy back in 2002. I never went into heart failure, however, and now my heart is normal, so there is hope. Don't give up.
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I am so sorry for your loss. Two years IS a long time to take care of someone in your own home. It's hard when they're with you 24/7, and not in a nursing home or assisted living. I would suggest going to grief counseling. There are free support groups in every community. My mom and I went after my dad died and they were a great resource.
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my female friends mother died unexpectedly a few years ago. her sister came here from calif and decided betsy was getting too much of her mothers assets. the sister called the estate attorney and was squawking about litigation. the atty told her if she wanted to hire a lawyer and drag this on for a few years it was fine with him. that was the end of that noise. siblings are always going to grumble when their delusion of big bucks is shattered.
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You are right, ChristinaW: Be the best Mom and Grandmother you can be and carry on her legacy. A perfect way to honor your own Mom.
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Wow, FedUp, you are amazing. Your Mom must have been great. I try hard to think of how I will honor mine when she passes. I am working on it.
I think the answer is to be the best Mom and Grandmother as a new example. That's what I planned since I was 7 years old. My kids rock, they love and respect me, so I was right:) xo
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I lost my mother to breast cancer 34 years ago and I still miss her every single day. Not everything helps but here are some that work for me: Whenever I travel anywhere, I light a candle in a church in her name. When I see a rainbow, I am reminded of the time we stood together watching a huge rainbow the week before she died. I plant trees and flowers in her memory every spring. I keep favorite photos of her around the house and made a CD of her life in photos which I gave to other family members. I journal missing her and will put it into a book someday for me and anyone else who follows who wants to know how she was. I donate blood whenever anyone dies or is ill in honor of the life she gave to me. It is not the same as having her back with you, and I am truly sorry for your loss. Time does not really change the grief, you just get used to living with it. You have done the best you could for your Mom. I go to a therapist to grieve when people in my family seem to have moved on or never cared in the first place.
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Two years in itself is not a long time to be a caregiver, but you are grieving your Mother. You will regroup after you take care of residual business. Forget about what your siblings think or say. Learn something new, take up a creative hobby, garden, read more, exercise. You will figure it out. Mourn, and regain your strength :) xo
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Thank you. My other worry is that my husband had a virus attack his heart when he was only 51 years old. It was badly damaged and he has been unable to work since. I don't know how you go on without your husband. We have been together since we were 15 years old and I have never been completely alone. We will have our 40th wedding anniversary in August, but I worry some days that he won't make it. I am so impressed with widows who can go on and sometimes even smile.
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I am so sorry for your loss. First, do the best you can to ignore and NOT believe anyone who says you stole the money. They are clueless and greedy. Second, it is very hard, I lost my husband after about 6 months of illness and I have been trying to be happy. Sometimes support groups can be helpful and maybe a new hobby or and old one that you have not had time to do in the last 2 years. I am struggling too, but look for the good and remember that she is no longer in pain and would want you to be happy.
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