***First off I want to say this is NOT quilt related at all. I have been dealing with a lot of things in my personal life right now and that has pretty much kept me away from much on the quilting front. I think I need to share, maybe it will help someone else to know they are not alone.***
This may get a bit long but here goes.
I am the middle child in my family. My older sister (three years older) was born developmentally delayed and with cataracts on both eyes. My parents tried for many years to have a baby that lived and I am sure they were happy to have her, even with her issues. My mom contracted the measles during her pregnancy. Then three years later I was born. I think they were thrilled to have a healthy baby girl! There were several pregnancies between myself and my younger sister. She was born 9 years later. Both of my sisters were very small at birth, 2 lbs 11 oz and 3 lbs 11 oz. The younger sister developed a very high fever in the incubator and it caused some brain damage. She is slightly developmentally delayed (not diagnosed) and has Cerebral Palsy. There were 9 other pregnancies, some were miscarried, some were born dead and some were born live, lived a few days and died. So now you have the background.
When my older sister was 13 she developed Schizophrenia. There were many therapies and treatments tried but it was not easy to get her stable. Nothing seemed to work for very long. After an exhaustive amount of time and trials, she ended up in the state hospital for the mentally ill. Let me tell you where you NEVER want to be. It was there! Eventually in and out of several adult foster care (AFC) homes in 1987 she ended up in the home she is still living in. The people that care for her are amazing folks. My sister developed additional issues, she became Bipolar. The depression was unable to be controlled with anything except for electro convulsive therapy, or ect. She has a treatment every 14 days and has had for more years than I can remember. It is the only thing that can keep her depression under control. This is very difficult to come to terms with for me. It began way before I became her guardian, but it breaks my heart that she has to go through this. She is a very sweet soul and I love her dearly.
Fast forward to 2011. I realized that my dad was needing more help so I began to go to Grand Rapids (a 3 hour trip one way for me) to help him and my younger sister, who still lived in his home. My folks were hoarders. We (hubby and I) went every week and began cleaning out the "stuff". My sister could not walk, with her crutches, around the house let alone use a wheelchair. It took us years to get the stuff cleared out, well, as much as I was allowed to do anyway. We cleaned and cleaned and my dad kept saying he liked it the way it was. After we had it pretty cleared out he seemed much happier though. His health declined to the point that we needed to put him into assisted living.
That meant we had full reign to clean out the house and get it ready to sell. I think we filled an entire dumpster when my mom died. Then filled the garbage cans weekly so at this point I was not sure about how much more we would have. Ohhh, wait, yes, we filled 2 more dumpsters and had an estate sale! AND I can't even tell you how many car loads we brought home to sort through and some of the hoard is still in my daughter's basement waiting for me to sort through it. Finally, when the house was cleared out, we could get it ready to sell. No easy job that. They had lived in that house since I was 5! They built the house.
This also meant I had to find a place for my sister, as she could not maintain that house alone since I was not living close enough to be able to help her like she would need. I found her an apartment where her boyfriend lived. He was nearby, and she had made friends there. So in August of 2013 we moved her into an apartment. We also moved my son into his apartment that same time. As my dad's health continued to decline and he found every possible way to thwart any of my attempts to help him stay safe, he had a fall and broke his hip. It became abundantly clear that he needed to be closer to me. We moved him to a group home in my city in February of 2014.
I was estatic! I could visit him every day now. We could take him out, we took him to the farm. I was so looking forward to the summer. Unfortunately, it was not to be. He passed away in June.
If you have been following me at all you probably know most of this anyway.
So this means I am now the sole person responsible for my sisters. I am the guardian of my older sister. She is fairly stable and requires only a minimal amount of my time. I check on her and visit when I can. She doesn't know who I am though, which makes me sad.
My younger sister is a completely different story! After living at home for 46 years she is emotionally about as mature as a middle schooler and has exactly zero ability to trouble shoot anything. She is also afraid to try. It is very exhausting sometimes. I feel God has told me that I need to learn how to be patient. I'm trying.
This week we had to move her from her current apartment into a handicapped accessible place. That was great! I also found out that her Medicare situation has changed and that is not so great. After my dad passed, her Social Security payment increased. That tipped her into a "spend down" account. (New from Obamacare, thanks for that). The letter said she had to spend $887 before Medicare would pay any of her medical bills. She has a caregiver that comes every day to help her bathe, does the shopping, cooking, cleaning and laundry that she is not able to do for herself. That costs about $700/month. I thought the $887 was like a yearly deductible, but noooooooooo. The way it works is that once you pay that amount out of pocket, Medicare will pay your medical bills for the rest of the month. So if you are paid out by the 15th they pay through the 30/31. Then on the first of the next month you start over and have to satisfy the $887 all over again, and so on and so on. Say WHAT??? How can someone living under the poverty level be expected to do that??? So needless to say I am in the process of fighting this.
The care of my sisters weighs heavily on my mind all of the time. I am beyond frustrated right now and no one, friends or family, can really help me. It is something I have to figure out for myself. The system is not an easy one to navigate. Getting help for a physical disability is not easy either. I finally found an advocacy group that I think can help me if I get stuck again. I am trying to get my sister re-classified as a Disabled Adult Child or DAC. I will keep you posted if anyone is interested. Anytime you deal with the government things move forward at a crawl. I am working on it.
I am not writing for sympathy. This is part of my life and I know God has placed me here to care for them. I have a wonderfully supportive husband, family and friends. Still the navigation is mine alone.
I take hope from my God. I look forward to this Easter season to renew my faith and remember that this is nothing compared to what Jesus did for me.
Have a blessed Easter.
Take care of and love one another.
Back to quilting stuff in my next post = )
~PAMX~
This may get a bit long but here goes.
I am the middle child in my family. My older sister (three years older) was born developmentally delayed and with cataracts on both eyes. My parents tried for many years to have a baby that lived and I am sure they were happy to have her, even with her issues. My mom contracted the measles during her pregnancy. Then three years later I was born. I think they were thrilled to have a healthy baby girl! There were several pregnancies between myself and my younger sister. She was born 9 years later. Both of my sisters were very small at birth, 2 lbs 11 oz and 3 lbs 11 oz. The younger sister developed a very high fever in the incubator and it caused some brain damage. She is slightly developmentally delayed (not diagnosed) and has Cerebral Palsy. There were 9 other pregnancies, some were miscarried, some were born dead and some were born live, lived a few days and died. So now you have the background.
When my older sister was 13 she developed Schizophrenia. There were many therapies and treatments tried but it was not easy to get her stable. Nothing seemed to work for very long. After an exhaustive amount of time and trials, she ended up in the state hospital for the mentally ill. Let me tell you where you NEVER want to be. It was there! Eventually in and out of several adult foster care (AFC) homes in 1987 she ended up in the home she is still living in. The people that care for her are amazing folks. My sister developed additional issues, she became Bipolar. The depression was unable to be controlled with anything except for electro convulsive therapy, or ect. She has a treatment every 14 days and has had for more years than I can remember. It is the only thing that can keep her depression under control. This is very difficult to come to terms with for me. It began way before I became her guardian, but it breaks my heart that she has to go through this. She is a very sweet soul and I love her dearly.
Fast forward to 2011. I realized that my dad was needing more help so I began to go to Grand Rapids (a 3 hour trip one way for me) to help him and my younger sister, who still lived in his home. My folks were hoarders. We (hubby and I) went every week and began cleaning out the "stuff". My sister could not walk, with her crutches, around the house let alone use a wheelchair. It took us years to get the stuff cleared out, well, as much as I was allowed to do anyway. We cleaned and cleaned and my dad kept saying he liked it the way it was. After we had it pretty cleared out he seemed much happier though. His health declined to the point that we needed to put him into assisted living.
That meant we had full reign to clean out the house and get it ready to sell. I think we filled an entire dumpster when my mom died. Then filled the garbage cans weekly so at this point I was not sure about how much more we would have. Ohhh, wait, yes, we filled 2 more dumpsters and had an estate sale! AND I can't even tell you how many car loads we brought home to sort through and some of the hoard is still in my daughter's basement waiting for me to sort through it. Finally, when the house was cleared out, we could get it ready to sell. No easy job that. They had lived in that house since I was 5! They built the house.
This also meant I had to find a place for my sister, as she could not maintain that house alone since I was not living close enough to be able to help her like she would need. I found her an apartment where her boyfriend lived. He was nearby, and she had made friends there. So in August of 2013 we moved her into an apartment. We also moved my son into his apartment that same time. As my dad's health continued to decline and he found every possible way to thwart any of my attempts to help him stay safe, he had a fall and broke his hip. It became abundantly clear that he needed to be closer to me. We moved him to a group home in my city in February of 2014.
I was estatic! I could visit him every day now. We could take him out, we took him to the farm. I was so looking forward to the summer. Unfortunately, it was not to be. He passed away in June.
If you have been following me at all you probably know most of this anyway.
So this means I am now the sole person responsible for my sisters. I am the guardian of my older sister. She is fairly stable and requires only a minimal amount of my time. I check on her and visit when I can. She doesn't know who I am though, which makes me sad.
My younger sister is a completely different story! After living at home for 46 years she is emotionally about as mature as a middle schooler and has exactly zero ability to trouble shoot anything. She is also afraid to try. It is very exhausting sometimes. I feel God has told me that I need to learn how to be patient. I'm trying.
This week we had to move her from her current apartment into a handicapped accessible place. That was great! I also found out that her Medicare situation has changed and that is not so great. After my dad passed, her Social Security payment increased. That tipped her into a "spend down" account. (New from Obamacare, thanks for that). The letter said she had to spend $887 before Medicare would pay any of her medical bills. She has a caregiver that comes every day to help her bathe, does the shopping, cooking, cleaning and laundry that she is not able to do for herself. That costs about $700/month. I thought the $887 was like a yearly deductible, but noooooooooo. The way it works is that once you pay that amount out of pocket, Medicare will pay your medical bills for the rest of the month. So if you are paid out by the 15th they pay through the 30/31. Then on the first of the next month you start over and have to satisfy the $887 all over again, and so on and so on. Say WHAT??? How can someone living under the poverty level be expected to do that??? So needless to say I am in the process of fighting this.
The care of my sisters weighs heavily on my mind all of the time. I am beyond frustrated right now and no one, friends or family, can really help me. It is something I have to figure out for myself. The system is not an easy one to navigate. Getting help for a physical disability is not easy either. I finally found an advocacy group that I think can help me if I get stuck again. I am trying to get my sister re-classified as a Disabled Adult Child or DAC. I will keep you posted if anyone is interested. Anytime you deal with the government things move forward at a crawl. I am working on it.
I am not writing for sympathy. This is part of my life and I know God has placed me here to care for them. I have a wonderfully supportive husband, family and friends. Still the navigation is mine alone.
I take hope from my God. I look forward to this Easter season to renew my faith and remember that this is nothing compared to what Jesus did for me.
Have a blessed Easter.
Take care of and love one another.
Back to quilting stuff in my next post = )
~PAMX~
10 comments:
Remember God only gives you what you can handle with His help. God will send you help in many forms. Take advantage of this help.
Oh my, the previous comment just stated what I was going to say.
Bless you. Your sisters are darn lucky to have you.
BTW, when things seem overwhelming, I always go with the thought "I can only do what I can do."
Take it one day at a time, Pam. God Bless you and your family. Happy Easter.
Oh Pam I had no idea about this!! I'm in tears reading this.... I feel so bad for you and your parents, what they must have gone thru.....
Prayers for you!
Hi Pam. I feel your pain and frustration. I care for my disabled mother and my schizophrenic brother. They both live in the same house which is only 2 blocks away. As 1 of 10 siblings, I do get some help. But having too many fingers in the pie can prove to be more stressful than helpful. We do the best we can do and hopefully our families realize that.
loleen said it best....one day at a time. Will keep you in my thoughts.
I'm sorry that you have this stressful situation to deal with. My best wishes to you and your sisters. Happy Easter!
I'm in complete empathy for you. When you are remembering that God only gives what you can handle don't neglect the most important part of that statement which is "with His help". No one of us can walk in your shoes but it seems to me that you know His love intimately already. You are in my prayers.
Wow and I have been whiney this week cause things were just not going the way I wanted them. Hugs and prayers my friend.
God bless you, sweet friend! Hold on to this in your heart: I can do all things through Christ who strengthens me. (Philippians 4:13) 💞🙏🏻
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