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Re: AARP Caregiving Summer Break Contest, The love of my life, my husband.

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Message 1041 of 1,088

Hi Sandi,

 

Thank you for the reply. I have asked both sides of our familys. They either ignore my question or ignore us all together. They tend to sweep everything regarding feelings under the carpet. They do not like to discuss feelings. I have asked for help everywhere, with not much luck. We can't afford the utility bills at our apartment. We hardly get any food stamps because the county wants me to work. How can I work, when I have to care for my husband. This makes no sense to me. The county does not want to help us. They want people to be homeless. My husband passes out sometimes. I have to be here for when he does. If I am not, he could hit his head really hard and hurt himself badly or die.Why does it seem that everyone wants to "get rid" of poor people, people who are disabled, and people who have no choice about their lives? This is not a life that we have. We do not live. We are prisnors in our home. I really do not know what else to do. I only dream of a vacation. My dreams keep me going and my love for my husband. 

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Re: AARP Caregiving Summer Break Contest

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Message 1042 of 1,088

I'm a volunteer at a local long term care and surgical recovery facility were I visit with the residents and help them with different activities they have for the residents to participate in, and give them the company that they need to know they are people and not numbers.

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Re: AARP Caregiving Summer Break Contest

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Message 1043 of 1,088

Our family tries to take a vacation together every year.  My husband has Alzheimers Disease, we have 5 children and 12 grandchildren.  One particular year while we were on vacation each person took his/her turn being with "papa" doing whatever they wanted to do.  Everyone talked about how special the time was him. It worked for us.

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Travelling with my wife who is uses a wheelchair

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Message 1044 of 1,088

I bought a small motorhome so that I would be able to take her with me because I like to travel. she has a bed so she can lie down and a bath room when she needs it. It has improved our lives so much that we are happier now.

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Re: AARP Caregiving Summer Break Contest

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Message 1045 of 1,088
WEEK 2 WINNING POST

 

I take my Mom (90) out often  Easiest travel was the cruises we took.  Holland america did everything to make sure we were safe and comfortable.  The most important thing is to clearly explain what help you may need and what equipment you will be carrying. A cruise provides food, medical help is needed, entertainment and recreation without leaving the cruise.  i found that the tours off the boat were not as satisfactory as they usually did not have accomodations for wheelchairs, ramps or accessible bathrooms.  Mom could stay onboard and have fun.  I could go off on some tours. 

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Re: AARP Caregiving Summer Break Contest, The love of my life, my husband.

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Message 1046 of 1,088

I am very happy to see you are keeping a positive outlook and making the best of a bad situation. It is true people often turn there back on these situations, but realize at times this is out of fear, not understanding what you are going through, an what they may be going through in their lives. We never know other peoples burdens. Both of your families turning their back on you really makes no sense at all.Try to ask nicely why. Make sure they know you could use a hand. all United Way in your area for caregiver groups and resources for your particular situation. There is often help if you do not let pride stand in the way of asking for it.

Sandi Burkhart
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Re: AARP Caregiving Summer Break Contest

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Message 1047 of 1,088

My advise would be to seek respite care which is available in most areas. Call your local United Way to get resources avaiable for your situation. They could at least hook you up with a group for caregivers which may help you find someone willing to go with you and.or would be willing to work with you on resolving these issues. Respite is not always expensive and in certain situations and states can be free. It really depends oype of insurance you have and the needs of the person you give care to and what type of insurance you have. Many local agencies are available to help.

Sandi Burkhart
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Caregiving Summer Break Contest

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Message 1048 of 1,088

Hello my name is Anita and I am a caregiver for my mother who is 89. I was also taking care of my father who passed away a year ago this month. For years my mother and myself would drive to Las Vegas at least 2 or 3 times a month to see after my grandmother. Usually around the first of the month taking her shopping, running all her errands and making sure she had everything she needed for the remainder of the month. I often wonder why I never thought that one day I would be taking care of my mother or my father. My mind never went there. But here I am taking care of her and making sure she has all she needs. Its hard at times but it is also rewarding too. Especially when she says I don't know what I would do without you. For a couple of years now i have asked her, mama when are we going to Vegas again? We have not been there since my grandmother passed away, but last m on Mother's daythe Friday before we took the road. I packed a lunch, plenty of water, snacks for her made sure our cell phones were charged and we took off just like the good ole days! We always took our time and stopped at our regular stops plus a couple of more because I wanted her to get out of the car and stretch her legs and mine too! For years we spent Mother's Day in Vegas and I just wanted to do it one more time and so did she. Although when we got there and in our room we both crashed in the bed until later that evening. We went to our favorite place for dinner and she really enjoyed herself and so did I. We have family there and they were shocked to see us, they did not think we would ever make the trip again. We had dinner on Mother's Day with relatives and its a day I will never forget because it made her day. I gased up later that evening packed a few snacks for her and we were on our way home to L.A.the next morning. We made an extra stop in Barstow to get her favorite sandwich, can't believe that place is still there. I made sure she was comfortable going and coming. Now she wants to know when are we going again. Well next time we will be getting on that BIRD because my kids say the two of us will not make that drive again. I want to close and say God Bless ALL caregivers I never knew it was so many and we all know just about what each of us is going through. And thank you AARP for your assistance and giving us this forum.

Anita

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Re: AARP Caregiving Summer Break Contest

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Message 1049 of 1,088
Hello,

I am so sorry that you are sad, angry, and depressed. I do understand. Is there any way that your husband and friends could relieve the pressure from you more? Maybe, allow you to have a day or even few hours for yourself. You could have a "me" day. Go to the spa, shopping, etc. It is just a thought. Hope all works out for you. You are in my thoughts.
Kind Regards,
Sue
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Re: AARP Caregiving Summer Break Contest, The love of my life, my husband.

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Message 1050 of 1,088

Hello fellow caregivers,

 

My name is Sue and I have been with my husband for 10 years. He has been sick for almost six years. He was dianosed with sever/chronic pancreatitis and severe neuropathy. I care for him on a daily basis. He is in so much pain and he has so much trouble walking. As of now, there is no cure for his disease. We are young, (At least I think we are). He is only 50 years old and I am 47 years old. Our lives were changed forever the cold breezy night he had a severe seizure in our driveway. We were on our way to the hospital because he felt so horrible. I saved his life and did two more times after that. We are soulmates and I love him more than words could express. Our lives took a turn down a road with no more vacations. No more life and basically, just attempting to exist. The most we do in our lives are go to doctor's appointments. We used to be an active couple, with money. Now, we have no money and not much activity in our lives. There is not one person who trully understands what we go through on a daily basis. It is sad that nobody wants to even take the time to understand, especially our familys. We do make the best out of our lives with laughter and love. I make him dinners that he loves (on his special diet). He looks forward to meal time. We stay and continue to be positive. There is no negative feelings in our home, even though there could be plenty. Both our familys and friends all turned their backs on us, which has hurt us both very deeply. People tend to run the other way, when someone falls ill. We sih it was not that way, but it is. I know this happens to a lot of people who are sick with an illness and/or disease. The key to a successful life, is to never let anyone and/or anything ever get you down, stay positive, and to work together as a team. We do not need anyone in our lives who are negative and who do not care. We have each other. If we could live on love, we would be able to survive on our own because we would be trillionaires! We never asked for this to happen, but it did. We all have to do our best to make the most out of our lives. We are given our lives to us for a reason. Good things will happen to good people. We just have to be patient. We got married in April 2017. It was not my dream wedding and we did not even get to go on a honeymoon. It does not matter though, because we both finally married our childhood sweethearts. We went to middle school and high school together. Ten years ago, we met up with each other again. It was meant to be. Life can change in a split second. People need to realize how precious our loved ones are and we all need to cherish life. Things in life never go our way, but we hit them head on, together. More people in this world need to realize that some people are not given a choice on how to live. People do not ask to be ill and do not ask to be poor. Nobody wants to be. Be kind and understanding to one another. Compassion goes a long way.

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