Caregivers of disabled loved ones

[coolstufluvr]

My hubbie has survived cancer, is now a diabetic and has neuropathy. He is battle kidney failure and we have just been told his lungs are not filling to capacity. He was literally on the operating table last Fri when they decided NOT to do his back surgery as they wanted him to have another heart cathe first. He is in much pain and had a quadruple bypass in 2004. His daily care requires much of my time and sometimes it is absolutely exhausting. He will vomit for days and then will sleep for days. I am constantly worrying that he will stop breathing. He is not incoherent most of the time and he has limited "good days". He is now on Medicare but it seems when he is bad enough...we call an ambulance and they check him and SEND HIM HOME! He almost lost his leg to a bone infection and later last year had a big blood "thing" on his toe and they lanced it and sent him home! He has no spleen so he catches everything that comes along. He worked at a local home store and because of health moved from mgt to cashier...worked literally 2 hours and was taken to the hospital. Because of this he lost his life insurance. So on top of everything I have had to worry about income and financials. We sold our home 2 years ago and currently pay $600 a month rent. I have had to sell my home which is the only security we had due to his Soc Security taking so long. Now our credit has taken a beating due to his health and his partner not paying my payroll. He invented a product and it is now on the market but his partner is now trying to steal our patents. We have found out that he has done this to 5 other companies and we were an easy target as he thought hubby would die. So needless to say while I am trying to keep him alive I have my plate full! I need to see if anyone out there has any of the same issues and what are you doing to be able to work and bring in money. I was cleaning two houses but had to quit as one day I called home and he had fallen and was on the floor. I have my own heart issues and suffered a heart attack during Christmas. It is now affecting MY health but he is not so bad off that I can do anything other than try to find care for him in our home when we need it...which I never know when that is! I currently am a beauty consulant which I love but I am running into difficulty because I never know what his health will be and when I can work. I have no family members that can step in and help. If he passed today, I would have absolutely no income. And that is scary! His Social Sec is not enough to live on and I am at my wits end. We also have a senior in high school and so I will be dealing with an empty nest also. My oldest son is also getting married in June. Any ideas would be greatly appreciated! :o

[wingriderprincess]

As I was reading this I thought, "this is the kind of family our welfare system should be supporting", instead of how it is used. Have you considered filing for that? What about disability? You said when you dh passes :( you will , "have no income". Have you considered a company such as Walmart that is good about employing the disabled? I love to be greeted and welcomed when I walk into their store and see someone who is considered unemployable, standing there or in a wheelchair smiling because they are productive :)

My heart goes out to you. Contact your local ministerial alliance and see if they have any suggestions.

You are in my prayers :hug:

[coolstufluvr]

Thank you for your reply. Yes, we were on state assistance (monthly cash amount of $400, a limited food stamp allowance and medicaid which was worth more than the moon!) but even though it was not enough to pay even the rent...it stopped as soon as his Social Security came in. We were told we no longer qualified! My hubby can no longer plan any type of anything that requires him to be somewhere at a specific time. We have had to cancel countless dr appts as he is vomiting or sleeping or worse. My 17 yr old daughter was born with a dental condition and I called ahead to find out fees and then when I took her for the actual procedure it was $400 more than they told me because the state funded dental program didnt actually cover what they thought it would. They came out halfway through to tell me she needed flouride and that would cost $30 more.....I guess they didn't feel the need to mention the $400 more! I was informed that I could pay $100 a month on it! If I had $100 a month I would feed my family more food! I offered $5...they refused .... took me to court and won. In their paperwork they stated I had "given them a sob story about having a disabled husband"! You know, I have always tried my best to be honest and I know that the good Lord does not give you more than you can handle but.....good grief! I have to say though that my family has never went hungry...came close but ....and we have always had a roof over our heads. I did go to a pantry one time which was humiliating in itself but most of the food was expired and was junk food or full of heavy preservatives that we cannot eat. I used what I could and gave the rest of the good food to a "needy family". Isn't that funny! At Christmas my daughter came home asking for cans of food for a needy family and I gave her my last two cans of tomatoes...that was all we had! But we felt good knowing that we could help someone else. We have an astonishing family! I just thought maybe there are programs out there to help people in ...well...I guess even in PART of my position! ha! I am a hard worker but I cant seem to focus or be able to plan anything to actually hold a job. I thought if I could find an agency or something that is available if I have a MK appt and hubby is sick, it would help soooo much! I appreciate being able to vent and I keeping looking up and hopefully my journey can help someone else! I just realized that I really am a "caregiver" and it never occured to me! How strange! I always said "I don't know how those people do it!" And now I know. They just do it.
:)

[DieNarrin]

It is hard. I understand. My husband is home on disability on his downward spiral. I started my own buisiness to spend more time at home wiht him and to be available for when he needs me. I was very lucky in that what I do was easily transferable to a home office. The outlay has been tremendous and it is very tight now.

You need to look at filling for social security disability. It is a real pain and the paperwork takes a while. But that can help quite abit. (I don't know if that is what you already have or not.. but the amount is less than we get for my husband's SSI).

The toll it takes on you is tremendous with all the stress and worries. You need to make sure you find an outlet for yourself. Hopefully your kids can spell you from time to time.

Focus was (is!) my biggest problem. With everything that you are supporting it is hard to concentarate on work. Especially when you don't know if and when you will be needed at home.

I wish I could offer a solution, but that isn't possible. All I can offer is my understanding and my prayers for you and your family. Don't be afraid to ask for help from family and friends.

[Lee]

It is very hard not knowing what tomorrow holds. Most employers (all but very small businesses) have something called FMLA where you can take time off for a sick family member as needed, but it sounds like your biggest problem is your husband not being able to let you know if he needs help while you are at work. If he had Medicaid you could get Home Health Aids, but I am not sure how much Medicare covers when it comes to that, if you get stuck paying more than you make it is not worth it.... I know FMLA has been a god send to me, my son is sick often, he had 3 surgeries and 4 hospital stays this summer, I was out of work for over 2 months straight, we had $50.00 a week to spend on groceries...it was not easy with one vegetarian teen, one malnurished child that needs high fat food and is lactose intollerant, and two adults who ate what was there and somehow still needed to get things like toilet paper, and laudry detergent with that money too. We survived but it was not easy, it took 5 months to get back on our feet again.

[benswife]

i hope im posting right...im a mother of 7..3 of those are 3 year old triplets who were born at 29 weeks and have a huge range of issues..my son is autistic,has mild cp,and dev.delayed..one of the girls has brain damage in her cerebral cortex,causeing her SEVERE speech issues,and it delays her cognitive ability,and she is also now being sent to a endrocronologist(sp),due to her small size,and the fact that she hasnt grown or gained a solid pound in a year,and the other girl is also dev.delayed,speech delayed,ehlers-danlos syndrome,sensory integration dysfunction,and kidney disease....it gets hard i know....i wondered if anyone else out here were parents of a autistic child,or a special needs child

[Lee]

Hi Benswife,

Yes, I am the mom of only two but I also have an ex-preemie, my son was born a day short of 26 weeks, he is 14 years old now but has severe spastic quad CP, legally blind from ROP, seizures, scoliosis, GERD, and other unresolved GI issues, major weight issues, hasn't really gained weight in 4 years so is 5' 3" and only about 73 pounds. We see way more doctor's than we care to, he requires full care, he cannot sit on his own, feed himself, and can only say a couple of words. So even though I only have two I do know it can be a lot of work. My daughter is 15 (they are 14 months apart) and was born on her due date, we have no idea why my son came so early.

[blondgrl]

Oh, Coolstufluvr,
Your post really touched me. What a lot you have on your plate right now. I first want just to offer support and encouragement to you. Secondly, it may benefit you to re-visit your local social service agency and re-advise them of your situation. At times, it takes several visits to finally get the help you will need. Rules/Laws/Guidelines change so frequently & it may be that you and your family may qualify for something at this time, especially since you no longer count your home as an asset as it has been sold. The growing expenses that you are incurring now will also be taken into consideration. Make sure you keep detailed bills that you are incurring as they will count towards the way you qualify for certain things. Sometimes, you have to go back a couple of times until you find a caring and motivated person to understand and really go the extra mile for you. I promise there is someone there in that building that does care just may have to look around to find that person. There are also hospital social workers who can be assigned to cases to assist the family caretaker in situations like this. She /He may be able to direct and refer you to agencies that could come in and give you a hand, similiar to the hospice workers and there are also homemakers through the Dept. of Social Services in most areas. Especially if you let them be aware that you have your own physical conditions too that make this care you are giving exhausting for you to do alone. They can also help you to get the doctors to assist you with getting some of your needed supplies through his medicare so you will not pay out of pocket. Lastly, for you, please, please seek out a trusted person like your pastor/clergy that can be of support to you. I can only imagine what a load you are bearing right now. Hugs and prayers .

[arizonablossom]

hi benswife
I am full time carer to my son 22 years of age.
He is autistic with severe learning difficulties and has eplepsey.

coolstufluvr
your post touched me too xxx as a full time care I know how difficult everyday things can be and a lot of people who don't do it have no understanding of this.

[benswife]

hi ladies,and thanks to all that answered me as well..Lee,as a mothr of special needs children myself,i commend you so much..arizona...does it get any easier once they are older,the autism part??i guess,i never thought i would be in the world of special needs children,but i love my babies so very much,and i love them for them...the doctor in the nicu kept telling me very discouraging this such as.."they may be mentally retarded,they may have severe cerebral palsy...on an on and on....one day,i finally got sick of hearing the negative,an told him unless it was positive things,i didnt want to hear from him...the triplets also had rop,but theres was only a stage 1,and has since resolved..one of the girls had to have eye surgery on feb 8 of last year,due to severe strabismus,and hasnt had to wear glasses since...they are doing so remarkeby well,they amaze me every single day..chloe goes to the specialist about her"short staure"as they called it..and her ped actually talked to me about growth hormone injections..however,i dont know anything about these injections,and to be honest,im very scared to let her have them...the way i see it,she was only 2 pounds at birth,and 16 inches long,so while she is still very tiny,shes bigger than she was at birth..i think there big concern is the fact that she hasnt grown in a year..i think having these children has changed me in ways i never thought possible,in good ways...they are truely my miracle babies......

[mimarg5557]

All of you are so inspiring and loving...I can hear your struggles to LIVE and be well. To care for someone who is ill is terribly frustrating...the ill one, in this case myself, doesn't know and sometimes doesn't want the help you give, and I certainly don't appreciate my hubby for all he does for me...I am writing to tell all of you I APPRECIATE AND DEARLY LOVE your care for your family. thank you from someone who has to receive help often.

On the working note, the companies that advertise for work from home with your computer are legitimate. I am particularly interested in the SMC company...but investigate things you can do online, there are legitimate business opportunities...I have studied several, just haven't made up my mind about which one I would like to participate in.
Mary