I have been caring for my wife for over 3 years now. I have gotten used to the physical needs that she has and seem to do pretty well with this I think. It takes about 2 weeks of every month of total care to take care of her needs.
I find it hardest when her disease attacks her brain. When the hallucinations start or the swelling in her brain gets bad, she can become despondent paranoid and volatile. I think that is when i get the most upset.
That is where things are right now. In addition the swelling is pressing on her optic nerve and causing pain and lots of eye troubles. We have pushed her monthly IVIG up by 2 weeks in hopes that we can get back on top.
Right now, I am just helpless and overwhelmed. Just need to vent
Dear Oldcarman, I know very well what you are going through. It's only been 14 months for me, but the demands of my husband's illness are overwhelming. Until one can walk in your shoes or mine, they cannot begin to comprehend the helplessness we feel at times.
I have been caring for my wonderful husband's needs all these months. He has had three amputations (leg) in the past fourteen months and now gangrene has set in on two of his fingers on his right hand and on the forefinger of his left hand. The vascular surgeon says he has done all he can. Now it is just a matter of waiting for the "inevitable". I am just so honored to be able to take care of my husband. He is the love of my life. Because of that devotion and love, I am able to bathe him, feed him, assist him with other "personal" matters where hygiene is concerned. On top of all that, there are the household obligations, finances, yard and garden chores, laundry, meals, medicine management (he has over 23 prescription meds), and medical appointments. But somehow, someway, we persevere. We remain strong and carry on because we are committed.
From time to time my husband becomes disoriented and confused. Often his dreams are frightening for him. I'm sure his pain medication has a lot to do with his vivid dreams and hallucinations. I cut back on his stronger pain medication and have used his weaker one more often. That seems to be working better for us. Not until the first amputation had I ever experienced the phenomenon of "sundowners". It was terribly frightening for me. That was probably the most helpless I had ever felt. But we haven't had to deal with that lately...only very occasionally.
But rest assured, you are not alone. There are thousands of us (correction...millions of us) out here who are going through exactly what you are going through. Please be strong and keep the faith. Things do work out as they are meant to. And I truly believe there is "light at the end of the tunnel."
Good Evening, oldcarman. What did people in our situation do before Internet? I try to think of my ancestors doing what I do now, take care of my husband, only they did it in some log cabin out in the wilderness without benefit of doctors, drug stores, telephone, running water, television, and the Internet. It must be just awful for you when your wife's illness affects her brain. I had a neighbor in that situation when his wife's lung cancer spread there. He was very lucky in that a friend nearby used to go over every day for a while. Is there an organization specific to her illness that can provide some respite care? How about a church with kind volunteers? Has anybody offered to help (if they do, say yes!). Even if you don't belong to a church, some churches have groups that would be willing to send volunteers. And, are your neighbors any help? Do you have any family you can call on?
I think this is the main thing that people don't have a clue about: more than anything on earth, caregivers need somebody reliable to stay with the caregive-ee for a couple of hours so they can get out. I can still leave my husband alone for a short period of time, and my nightmare is that things will progress to where I can't. Paid help is very expensive and not always reliable and nowadays a lot of us don't have a huge family living nearby.
Being a caregiver is like being in a whirlpool of mixed emotions. We feel (as Misty says) honored to be caring for loved ones. We also feel terrified to see them change and shrink and look sicker and older and maybe turn into a different person. We feel panicky about how we will manage all that we need to do. We feel depressed because the situations seems endless and without relief. And, being human, sometimes we wish this would all just be over, then we feel guilty about feeling that way. Right now I am struggling to find the determination to do some regular exercise; it's more comforting to sit on the sofa and eat cookies.
I find it helps to realize that we caregivers are a community---we just don't see each other. At least, comparing notes on this board helps us unionize, or something like that....wrong word, but you know what I mean. Please stay in touch. We will all be looking for your posts.