Patient and caregiver..

[marti]

I'm sure there are some others out here who are both patient and caregiver. I'm beginning to need some encouragement.

My husband has some serious illnesses. He's been fairly okay until lately. His mind is muddy, forgetful, repetitive, very negative and depressed.

He has non alcoholic cirrhosis brought on by Agent Orange during VietNam. He is a bad diabetic, heart problems, has had skin cancer, bladder cancer and all the mess that goes along with this stuff.

I left him asleep this morning for just a little while. When I got home he was still in bed, but I found evidence that he had been up and had a problem in the bathroom. So I cleaned that up. He takes Lactulose to try to control his Ammonia levels which are high. He slept for a long time so I knew he must have taken an Ambien last night. When he woke up he was very slow, very unsteady. He decided to take a shower and went into the bathroom where he fell flat on his face. I am assuming the Ambien was still working. He won't tell me what made him fall. But I can guess.

Anyway, it's things like this that are creeping up now. I have to do all the driving, which is difficult for me at times. I have put all my health issues on the back burner... pretty much ignored. Afraid to take nighttime meds in case I don't hear him calling for me. Afraid to take meds during the day in case I have to drive to the hospital. So of course, my anxiety levels and pain levels are out of this world.

I know if I really need help our son is close and will help if he is available. We have good neighbors, but I really hate to ask for help. Some days Sam is in better shape. This falling stuff just started. I've already hidden the Ambiens and some other prescriptions. This way I can monitor them.

I just need to hear from people who are in the position of being a patient who needs a little help sometimes and also are caregivers. Being a caregiver is harder than being a patient right now. Where do you turn? How do you take care of your own symptoms? How do you face the future with an aging spouse who needs more help, but won't admit it?

I feel so selfish when he decides he just wants to talk (ramble is more like it). I turn it off and lose myself in a book. He really doesn't want a lot of conversation, just wants to tell me every detail of what he heard on the news, in a tv show, what he's read and his past stories that I've heard over and over. I'm a terrible wife.

[Tia1]

Wow, you have a lot on your plate. I think you should ask for help at least one day a week, so that you can recharge.

I will be praying that your situation improves for both yourself and your husband. Is there anyway to have someone come in a couple day a week?

[tejokid]

Oh hon, the very last thing you are is a terrible wife! My parents both had dementia for years, and my sister and I--both disabled to begin with--did everything in our power to take care of them. They refused all outside help except from us--no Meals on Wheels (didn't like the taste), no housekeeping (they already had a woman coming in--her contribution was to sit on her butt, drink coffee and gab, get paid and leave--but she was a friend, so...)

Constant vigilance and worry take a massive toll on caretakers. You body, mind, spirit and soul become completely drained because every moment of your life isn't your moment--it's theirs. You don't sleep soundly because part of you is listening; you don't see friends or have much-needed contact with the world because you don't dare leave the house in case something happens. But then the somethings happen anyway, over and over and over. You feel guilty because you couldn't prevent them, you feel resentful that your life has been taken over by problems, and you feel lost and alone.

You have every right to feel that way. That for-better-or-worse thing can get worse than anyone could imagine, as can honor-thy-father-and-mother. But we keep going no matter what because it's not duty or obligation that fuels what we do--it's love, even though love looks as battered as the loser in a boxing match.

Eventually my parents had to go to a nursing home--it was a wrenching, gut-twisting decision, but my sister and I literally couldn't go on any more. In fact, my sister spent a year in a nursing home herself due to injuries she got dealing with my parents' situation. During that time, I dealt with their deteriorating situation myself. There may come a time when you face that decision yourself--I hope not, but imagine what it would be like for him if it was you in a nursing home instead.

Reach out for whatever kind of help is available. Contact his doctor to see what resources he might know about, and contact your local aging society to see what types of help are available. One of the most helpful people I encountered was the social worker at the local hospital. All those people have a network of connections--make use of them.

You may very well feel inadequate to the task--well, of course you are. We all are. One person doesn't fight a war--it takes an army. The debilities of age and illness are battles, and it is not weakness to need allies. A "terrible wife" isn't the kind of person who cleans up bathroom disasters and secures medicine to protect a person's safety. You're exhausted and overwhelmed and the only terrible thing about that is the toll it takes on the two of you. Your husband deserves loving and dignified help. So do you.

[LaurieB]

I understand

I was a caretaker for both of my parents, two years straight through, until they passed away in my arms. First my father, then my mother.

They're complications were so numerous and so painful physically and emotionally.

I relapsed once and wound up in the hospital for six days so please, please somehow find a way to do your very best to do whatever it takes to rest and to accept and ask for help.

I could not have been there for them without help from my ex husband (we don't x the exes) and some volunteers.

I am so sorry you are going through all of this on top of the MS. I truly pray somehow you can get some help.

I have so much more I would like to say but at this moment, I have such brain fog, I wouldn't make sense.

I will keep you in my thoughts and prayers...

[marti]

I want to thank you all for your responses. I will add to this thread as soon as my nerves settle down and I can make sense again. I do want you to know that my husband is not totally out of it, but seems to be going in that direction. Mostly he is a little depressed about getting older, sicker and less independent like the rest of us. I don't think he much realizes that I have my own set of problems too. All he can see is his own pain right now. And truthfully, I think he is enjoying the attention he is getting. Kind of a child in some ways,

We've been married for almost 43 years. I'll do what I can as long as I can.