My husband is dying and there is no cure. I chose to care for him and in so doing my family abandons me. Missunderstanding evolved because of not knowing the symptoms and behaviours of Dementia/Alzheiner. This created negative reactions toward my loved one. We must work toward understanding Dementia/Alzheimer. Education about this horrible disease is the key to saving the breakup of families. Until you live with it you will never know how much the caregiver gives up just trying to keep peace in the family. The affected individual sometimes knows there is something wrong and cannot understand what has happened to their world and lashes out violently. Others do not realize there is anything wrong with them and are calm gentle people like my husband. Do we just throw them to the wolves? Are you cruel toward them even though they cannot help their plight? Should't we let the loved one have some self respect until they no longer know the real world! Do we just give up and send them away forever? The financial burden of this aproach will leave the surviving spouse in poverty unless they are cared for at home as long as possible. Please understand the Dementia/Alzheimer patient and their caregivers plight. The need for education of these diseases is crutial. When Do I Let Go?????
I would like to send this to my family members -- What do think? Anyway it felt good just typing it. Thanks for reading. Sweet Pea
Sweet Pea, ABSOLUTELY send it to your family and anyone else who will listen. I would say even to the President Of the United States, don't know your location but that is the best explanation of this horrible journey I have ever read.
Sweet Pea, Good for you. I think if there are family misunderstandings it is a very good idea to send out a message. By all means, reach out and attempt to improve the relationships. I am sending you an email.
Sweet Pea, I know exactly where you are coming from. I'm sure that you are doing a marvelous job, but no one can this alone. If you did have family support, which you and I don't, you could care for him at home alot longer. Without help, you will have to be open to accepting help through other sources. When and if you decide on nursing home placement, you will not be sending him away forever. In fact, your relationship may improve when the burden of caring for him has been lifted. Also, you not be impoverished as medical assitance in most states is pretty generous. You will need an elder law attorney to help you through the process, but you should be able to keep half of your assets plus your house and your car. I've stopped worrying about not leaving much to my kids because my first priority is my wife. Plus the lack of support from the boys is part of my problem anyway.
baltobob; I see you have sons also. My LO is my second husband (28yrs) and the children were grown when we married. All were close for a long time but one son decided I needed to get a divorce after DH dx. He was just thinking of it being unfair to me to have to take care of DH. I explained to him that if it hadn't been for DH taking care of me for 24 GOOD years that might have been OK but I WILL NOT ABANDON dh NOW. My above post was more for the benefit of the children. I am not too worried about the financial aspect, just pointing out the need for some educating on their part .
I plan on starting to look for Day Care shortly. I live in a very rural area and these services are not easy to come by. I also have joined a support groop which started about 6 months ago with 5 members. I have only gone to 3 meeting so far. This is where I founnd out about the day care. Only one is a spouse caregiver but I have received lots of help here on this board. I'm with you about inheritence. We saved for our old age and now is the time to spend it. Let them do the same. They have good jobs but not much good money sence. Sweet Pea
Sweet Pea: Sharing all of your concerns and problems and understanding your frustrations. You got good advice and compassion from the others on this thread, so there isn't anything I can add.
Wishing you a good day tomorrow. Keep us informed inre your progress.
Yes send it. And realize that it is a sad fact that many families abandon patients and caregivers of all the major diseases. We really do find out who our friends are. Send it...and publish it...it is priceless.
Good Luck with family help,my wife had four sons an when they found out what our problem was they scattered like the wind,this after she kept the family together with an abusive husband who beat the hell out of the boys an her,she took the boys everywhere,got them all into college, cosigned loans ,even a $50,000 mortgage yet they want no part of her now,words can't describe how I fell about the whole damn bunch of them
Don, whenever I get pissed off about that with his children, I think about the fact that life always takes care of the "getting even", "payback" and usually much better than I ever would. What really bothers me though is that by their example they are teaching this behavior to their children (the ones that should be there for them but probably won't be).
The words about "what goes around comes around" can be very true.
Ol don and therrja, this is what I did when I was dealing with frustration and hurt over a family member a good 20 or 30 years ago. I just turned the whole situation over to God and let Him deal with it. It wasn't my problem to look for payback or revenge. I could just let it all go and get on with my life. This, by the way, is the real meaning of "forgiveness." And it is all that is required. You don't have to believe that whatever they did was OK, just that payback is not your problem.
It made me feel free of the situation. Not my problem. Not my business. I was around long enough to see what came next, karma-wise. I would never have been as mean to anyone as what happened next. What goes around comes around, indeed.
Ann, I've done it two or three times in my life. Twice with abusive bosses. In one case I can't even remember his name. In the other I remember his name because I was his secretary, but he didn't affect me all that much even when I was working for him. The real lesson that time around is "sometimes you leave," which I did as soon as the economy let me.