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Any help for caring a chronically ill spouse on the ASD
My husband was diagnosed on the ASD at the age of 41. He was diagnosed at the Mayo Clinic with Non-epli. seizures. We have been relying on family and friends as needed financially for help. As his health keeps declining. He has forgotten who he is and where he lives. Who his family is. Amongst other things and new onset of PE's with a blog clot in each lung as of jan 1, 2024 with the diagnosis of Covid. He's in chronic pain since jan 1. Shortness of Breathe, pain in his chest, arm, legs with weakness. He's shuffling his leg now because of the pain he says. He has a cardiologist, a new lung specialist, . Since Jan 1 till now i believe we have had a total of 5 or 6 ER visits. I am a substitute teacher i only worked one day in January a half of day because his dad came by for about 2 hrs. Its difficult to leave him home because he passes out without warning. He doesn't let me know if he needs his medications. He forgets or like recently i thought i had filled enough slots for his medication in the medication dispenser with the days on it. He used the last of that night but didn't have any for the morning and he didn't tell me until we were on the way to the dr. office and i asked did he eat he said yes, did you take your medication on the table he then proceeded to tell me he was out. I have tried home health care and got denied because they didn't take his insurance. I have called Aging services, disability service in Georgia getting the same response and questions as to whether his needs are more mental health behavioral services or home health and passed around for the thousandth millionth time. He has been denied social security for times and suppose to appeal again like now and i don't if i am going to be able to make it in time to beat the time before another decision is made.
Plus our eight year old has been sort of diagnosed with ASD since i have known since he was three. Waiting on the full diagnosis results. And he has been a challenged thus so far lately and i get it but it like a support system is needed for some balance in our life! I haven't worked outside of those two loves in my life because i am a full time caregiver for my husband and i have to get my son to appointments as well. And lately its been one doctor visit and ER after another one and i myself have my own health issues. I wanted to work as a substitute teacher for many reasons its something i have done in my earlier years of life and i love it. It was for the flexibility for my now life but now its not what i need because if i don't work i don't get paid its though to balance right now with everything. Can anyone understand this and relay some advice or resources for this family of ours in Georgia?
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Hi @lea46, welcome. I have added your discussion to the Caregivers support group as well as the ASD support group. There's a lot to unpack in your message and I'm sure you haven't shared the half of it.
First, I want to acknowledge that you've got a lot going on. You have dedicated yourself to caring for the people you love most in life. And you've also found a calling in substitute teaching that gives you the opportunity to share your gift of giving to others as well as give you the flexibility to continue to care for your husband and son.
Lately, however, the fine balance that you have orchestrated between caregiving, being a wife, mother and daughter-in-law has been put out of whack. Health issues have meant more appointments and even emergency situations. It's overwhelming and you're afraid that it may be unsafe - your husband isn't able to follow his medication plan, your son's medical situation needs attention and you have health issues of your own.
Clearly, you need someone by your side to help you out. I recommend starting with a social worker. I encourage to look up "My Help Navigator" https://myhelpnavigator.auntbertha.com/ It is a social care network that connects people and programs — making it easy for people to find social services in their communities. You will find free and low cost help in your area, including social work.
Here's the link to My Help Navigator: https://myhelpnavigator.auntbertha.com/
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3 ReactionsMy situation isn’t and hasn’t been as dire as yours, but I do get it. I have an aging husband with a touch of dementia, and bone cancer. I also cared for my brother who had ASD until his passing a year ago. I also have my own health issues and have had to basically give up work outside the home. Although my situation with my horses right now is kind of crazy.
Some days it is so hard you feel like you can’t breathe, and at the end of the day you have given a piece of you to every little thing and there is just nothing left.
Since I know @colleenyoung has all the best links to find help, I hope this help finder can get you some.
Here are a few tips I use when things get too heavy. I have an extra chair in my bathroom, I will go in and close the door and just spend a few minutes putting lotion on my self and try to just think of the words to a favorite song or poem, this helps to clear my mind on a short break.
In the summer I go out to water the shrubs, same principle. Not so far away that I can’t run in and help, but carving out a little peace.
You are not alone❣️
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3 Reactionsthank you for being a link in the journey for our family!!
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3 Reactions@lea46 I found another resource for you and it’s just for Georgia.
https://rosalynncarter.org/georgia-care-net/
Have you found any neighbors or family members who are able to help for shot periods? Maybe make dinner, pickup grocery items, small chores.
I’m sure those in the caregivers group will be able to help.
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