Do you know what you would do if
December 24, 2009 7:32am CST
your spouse became incapacitated and required 24/7 care? I thought I had all the answers until it happened to us. In attempting to get him more help, I made decisions in haste that I now regret at leisure and it's destroying us. My husband had a massive stroke from which he will never recover. The right side is destroyed completely. He can no longer tell me his wishes or do much of anything except feed himself with his left hand. My son wanted us to move to be near him so he and his wife could help. Without thinking it through, I checked to see if my husband could get care he needed in PA. The answer was yes. Within two weeks, I moved him from FL to PA by ambulance, found a rental house for us, put our house on the market as a short sale, and moved to PA. Just prior to moving, I started getting ill myself,but wasn't sure what was going on. My first full day in PA put me in the hospital with a severe bleeding ulcer, requiring a week in a teaching hospital where they kept trying to cure everything with morphine, protonix by the bag and five bags of blood (plasma). Ever concerned about my low blood pressure, the morphine made no sense because it pushes the pressure lower still. Talking to them did no good. Once out of the hospital, I had to rest for a week, but couldn't bring myself to stay put that long knowing my husband was wondering what had happened to us with the move, etc. I had thought Bruce would receive more long-term care. But, after six weeks, they said they couldn't keep him any longer, so he came home to a rented house with bathrooms so small I can't get him in them for a shower or on the toilet, so a portable toilet is necessary. We are in the country without close neighbors or any stores nearby. We used what little savings we had to move here, so I can't afford in-home care while I shop. My son works nights and sleeps days and my daughter-in-law works 10-16 hour days, so I don't feel right calling on either of them and their visits are few and far between. Christmas this year was a disaster. We celebrated on December 20 so my daughter-in-law could spend two weeks with her sister. My son has to work December 25th. I got guardianship of my husband in court yesterday and as a last note, the judge told me I cannot leave this miserable place without court permission. In other words, I have to come up with another $3,000+ to get a lawyer to go before the judge and beg to let me get out of here. No one explained that to me before the court proceedings and it has sent me into a downward spiral of despair and depression. We are prisoner's of a benevolent guard, but prisoners nevertheless. There is little if any chance to meet people, so we are alone. My husband cannot talk, our daughter has Down's syndrome and is not a great conversationlist. We have lost all of our friends, including those my daughter got to see each day, cannot get out of this house to even walk around because instead of the flat streets of Sarasota, FL, we have hills - nothing but hills which, I can't trust my husband on with his new electric wheelchair. He is mystified as to how to use it. And don't forget the fifteen inches of snow blocking the way. This is akin to a death. No decision should have been made for a year at least. Hurrying has done nothing but lose our home and many of its possessions since there was no room for them in this house. It took three months to get a ramp for the wheelchair although ten people kept promising to build one. I finally discovered a portable one and bought it. It sinks so much when one person walks on it, I'm afraid the wheelchair will break it. Would you have been as stupid as I? Would you have let youself be talked into moving to a strange place? I came up to look at houses for three days and discovered rental agents do not work on weekends! That gave me one day to find a place to live. Renting is so different from owning. After forty years of owning my own home, it's even more depressing to have to beg permission to do anything around this house. Don't get me wrong, my landlady is awesome, but still, it's her house, not mine. My beloved Florida, where we hoped to live the rest of our lives is gone and so is any hope of ever returning. For the first time in my life, I feel it isn't worth going on. If you are ever in a similar position, NEVER let anyone talk you into anything at your moment of weakness. You will suffer the regrets we do, if you aren't careful.
• United States
24 Dec 09
I feel very bad for you and your family. I have little words to comfort you but want you to know you have my sympathy. Also, where at in PA are you? I also live in PA. Course I know PA is a fairly big state so with my luck you are hours away! I have no idea what I would do in your situation and I fear it! I am only 25 now, boyfriend is 30 and my son is 10 months old. But I lost my job in May and so things are very tight money wise. I already think that if my boyfriend got hurt at work, we'd be in a bad way. He owns his own company and had to waive workers compensation for himself. So he wouldnt have that, I dont have a job, plus who would take care of him? The home we live in now has steps outside and inside. It would be a nightmare! I hope your situation gets better!
• United States
24 Dec 09
If either of you are overweight, get rid of it now!!! My husband is 5' 4" tall and weighs 273. He can help work with the left side, but it is weak. The right side can do nothing. If my daughter wasn't helping, I could never manage him alone. When she is gone, that's when the nightmare begins. We are in Dover in York County. I am trying to find work at home, but without luck so far. Hope to start selling a cosmetics line since they are working primarily online now. Since finding out we can't leave this place without the court's permission, I would recommend NEVER getting guardianship unless there is absolutely no other way to get your financial matters together. I had no choice since Bruce's paychecks could not be transferred to our bank up here, nor could I find out about Social Security Disability without being his guardian. Having a Durable Power of Attorney does no good when trying to work with government entities, only private enterprises. I hope you and your family never have to go through anything like this, but if you do, do not make any life-changing decisions until you have a year to think things over.
• United States
24 Dec 09
I am writing to give you my deepest sympathies. I do have to say that I cannot understand the full depth of what you are going through. Have you tried looking for community programs to help you? As hard as it is to ask for help (and yes, I do know how hard that part is), finding community resources could greatly benefit you. Even if it is just somebody to talk to who can listen in a nonjudgmental way - to allow you to express your thoughts and guide you in finding community resources that would help you get some physical help for your husband. Taking care of your husband and your daughter is a full-time 24/7 job that if you are not careful will take a severe toll on your health (as you have found out)- both physically and emotionally.
• United States
24 Dec 09
I have attempted contacting community programs and am told we are too wealthy for help. We almost make enough to cover monthly bills, but not enough for the co-pays on meds. I don't know whether to laugh in their faces or cry. Even in court, with the court appointing an attorney for my husband, they decided I had to pay him. I can't even pay my own attorney! A life long friend volunteered to do that. Ain't life grand?
• United States
25 Dec 09
Cheer up you are not alone in rushing decisions for I went through it back in 2004 with my uncle and yes ended up in hospital myself before it was all said and done with. I did not move for that would of been just to much but had to make some very hard decisions that I would not of done if I knew the out come and my uncles wishes had changed. He was misable after becoming ill at a blink of an eye and would of told me to let him go instead I did what he had always told me and do everything for him to live. I would love to know some information even more about why you had to go to court and get guardian ship over your husband. This makes no sense to me and why would they not allow you to move unless you got there approval this makes even less sense. I know it has to be hard for you living with two people that need your care and attention. I might be able to get some help for you from a friend that was in the medical field for years but not more paperwork if you don't mind me sharing your posting. I have some people I know in PA that might become your friends as well. We got to pull together for this world everyone needs help in one form or another. If I was there my hubby would build you a strong ramp and one you would not have to worry about. As for the snow many of us have that problem but makes it worse when dealing with wheelchairs that is for sure. One major question I have is there no medical insurance for your husband? here is a website a friend told me about that could really help you in all areas of your life please give it a try. www.wishuponahero.com this has helped me and I am sure it can help you with something in your life. Make a wish and give it time to see if and how many offers you get even if it is just friendship. Good luck and keep me informed and if I think of anything else that might be able to help I will get a hold of you on here and let you know. God Bless you and Merry Christmas.
24 Dec 09
My deepest sympathies are with you. I do not find myself well experinced to suggest you something, but still I want to tell you that everyone makes mistakes so thats normal but to be human you have understand atleast through your own mistakes. You did not do something out of the world every other person could do so in such a scenario. Your you took the words of your closed one's when your mind was not coutious and your heart was crying. All I wanna say is that, its only his right to take the decison who is going to face it, because only he can foresee future conditions as only he knows his exact current position. Finally, last thing I wanna say is, whats gone can't be undone now, take a practical decision weather you wanna go back(if its possible) or you can still have a better life where you currently are. Once you clear your mind after taking all the considerations and take your final decision, follow it(I am not at all trying to say move on with your life, I trying to say take things under control).
• Trinidad And Tobago
24 Dec 09
When I read stories like this I remember my own grandfather who spent his last years in a chair in the porch with my granny getting him every single thing. This does happen. Also, I, myself, have always rented. I've never owned my own home although I really would like to. Yes, I agree, landlord's can be a real bother but they own the place. I've known stories like this all my life and the truth is its hard but we cannot always have things the way we like them. So pray and do your best to get used to the new situations you will encounter. After a while you will become more accustomed and it will be easier.