Some of you know my story some do not. So I will give you some background for those who need it. My Dh has a rare diease that causes his soft tissue, muscle, cartlidge, tendons, ligaments and internal organs to turn to bone. It is rather far in its progression and we have maxed out all meds to slow it down. They have given him 2 maybe 3 yrs at the most to live. Unless for some reason his body wakes up and responds better to the meds. So, needless to say I stay home and take care of him. His daily care falls on me 24/7. I do have a nurse that comes out once a week. But she is mainly here to check meds and such. We are on PA and you know what I am not ashamed. I feel lucky it is here for me when I need it. I may have so little time with him and I plan on being with him everyday until he is taken from me. His family also helps as much as they can. And he does recieve disabilty. So we do pay our own bills but do recieve FS for our food. We live very meekly bbut we are happy. So, today anew nurse came out, never met her before. And my littlest one came in and gave me my EBT card and said here momma it fell out of your purse! I said thank you. And she looked and asked if that was a EBT. I said yes, and she said don't you think you need to put him in a nursing home and get a job if you can not feed your family! I just said to put herself in my shoes and then say that. I would not make enough to put him in one if I wanted to. And no way his disabilty would cover it. But I would not let my children watch their father wither away in a place like that. I do everything for him.. dress him, feed him (hands are affect he can not hold anything), bathe him, switch from wheelchair to whereever, and take care of his hygeine in bathroom. Now it humilates him to have to depend on me so much so it would be worse with a stranger! I just could not believe she said this and I did call the healthcare place and comaplain and ask them to not send her back out. I just wish ppl were not so quick to look down on someone on PA. Sorry got so long just needed to vent!! Love and hugs~Clarissa
Good for you standing up for yourself and your family. You are doing exactly what you need to be doing. Sometimes you need a little bit of help to take care of your family even more so when you are taking care of your husband in his last few years.
Wow! First off I am so sorry and I think that is great you are takinng care of youre husband! He needs you! I think that is crappy she said that! I hope this doesnt sound mean, but you will have all the time in the world to work later on, however you apparently do not have all the time in the world left with youre husband. I am so sorry! I have no issues with anyone being on PA, you of all people need it more than anyone!
i kno in school they taught us not to say things about which insurance the patients had and if they were on Pa that was none of our concern. We focus on the task at hand and thats making sure our patients get the best possible care no matter who is paying for it. We treat everyone with the respect they deserve and we are to never look down on anyone or judge them for the lifestyles they live even if we dont agree with them. Im pretty sure what she said could cost her her job. Not only is it non of her business thats just very unprofessional. I would have asked her to leave my home and called the Health agency right away and asked them to send a different nurse out there. You have to do whats best for your family and I've worked in a nursing home, and its not the best place you can put someone. Even if you can afford it and even if it reduces your stress. Sometimes the patients dont get the care they deserve. I've seen this first hand and it pains me to see this happen to anyone. You are doing whats best for your husband and if you want to take care of him at home dont let anyone discourage you. I would make sure that nurse never came to my home again. And i would make sure the agency knew she wasnt allowed. Good luck mama i know things are hard but your doing the best for you and your family!
Breastfeeding/formula feeding, non-circumcising, vaccinating, co-sleeping, disposable diapering, spanking when needed, forward faced at 1, feed my son whatever he wants in moderation, Wife to Joey since 01/06, mother to David James since 07/12/07, and pregnant with baby number two due June 7, 2010.
That nurse had no right to say anything...shame on her. You are a wonderful wife and Mother to be taking care of your husband & your children 24/7, that is a true strength and love. It is good to know that PA is helping you and your family during this most difficult time. God bless you and your family. Wishing you a great Thanksgiving.
That was very rude of her to say anything to you. You are a very good person, not many would do what you are doing for your husband. You understand the true meaning of a marriage. However if it ever comes to the point where you cannot care for him on your own please do ask for help. Have you contacted Hospice? They have nurses that can come out every day, and you can get medical equipment such as hospital beds, things for the bathroom to make it easier in there. Its no cost and in the event you cannot care for him at all at home he can stay in a hospice center. My husbands uncle had liver cancer and toward the end a nurse came out every day and they had a bed for him and basically made his room into a hospital room. They had everything they needed there but it was in the comfort of his own home.
"A government big enough to give you everything you want, is also a government big enough to take from you all that you have." - Gerald Ford
"They that can give up essential liberty to obtain a little temporary safety deserve neither liberty nor safety." - Benjamin Franklin
"Freedom is never more than one generation away from extinction. We didn't pass it on to our children in the bloodstream. It must be fought for, protected, and handed on for them to do the same, or one day we will spend our sunset years telling our children and our children's children what it was once like in the United States where men were free." - Ronald Reagan
i think she is heartless... i would do the same thing if i was you, mama! **hug** my thoughts and prayers go out to your hubs... and to you... i hope for a miracle for you guys
Koko- navy wife-mommy of two- currently baking baby #3
OMG I would have thrown her out of my house by her hair. You are the family the PA was meant for and I'm glad to know you are getting.
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- sissacma
on Nov. 24, 2009 at 10:26 PM