Newbie Who Needs Help - Caregivers Message Board

annas479 · 11-21-2007, 02:46 AM

Hi All,

I'm new here, but not to caregiving. My name is Anna, and I'm a SAHM to my 17-yr. old son who has an intractable seizures, symptomatic of a progressive neurological disorder he was born with. He also has PDD-NOS: Pervasive Developmental Delay - Not Otherwise Specified (although he has Autistic tendencies), ODD (Oppositional Defiant Disorder), and OCD (Obsessive Compulsive Disorder). He had a Corpus Callosotomy (brain surgery) 3 months ago for his 'drop attacks', and I'm happy to say that's helped him.

I guess I'm also a SAHW - "stay at home wife" - for the following reasons:
As heavy a load as my son carries, my husband is the main reason I'm here. He was dx'd last year with Cirrhosis of the liver (alcohol-related), when he experienced liver failure. He quit drinking immediately - I'm very proud of him for that - and has followed his dr.'s advice, taken all his meds, etc., ever since. He made what his docs called a "miraculous recovery", despite being dx'd as "end-stage" last year. A month ago, however, when he had what I call a diabetic seizure, because his blood sugar dropped below 20 (!!), I called an ambulance and he spent a week in hospital while they stabilized his sugar level. He had been dx'd with Diabetes Type II just 3 days prior to the sugar crash, and was put on 5mg of Glyburide 1xday. In the hospital, the docs decided 5mg was too much for his liver to handle, causing the crash. So they decreased the dosage to 1.25mg, which seems to have worked out. Incidentally, he also has Rheumatoid Arthritis in his knees, High Blood Pressure & Obstructive Sleep Apnea. His blood pressure is controlled with medication, but he refuses treatment for the Sleep Apnea and the Arthritis, which creates more problems, compounding his overall health obstacles.

It's been a VERY long month since the last hospitalization, mostly just because my husband has an extremely hard time accepting that he has ANY type of illness, even the flu, much less something serious. He stubbornly refuses to believe he actually has Diabetes at all, refuses to eat right or even try to exercise at all. He still eats a ton of sugar - in fact, all he'll eat, for the most part, is sweets. I got him to eat a bowl of chicken soup today, and it was the first time in 3 days that he's eaten anything besides ice cream, popsicles, candy or pie! No matter what I say (or anyone, for that matter, including his drs.), he won't listen. This is NOT how he reacted to the Cirrhosis dx at all. And he knows very well how serious diabetes can be, especially if left untreated, because of his 2 uncles who both have it.

Also, his personality has changed, his mental state altered, his short-term memory is non-existent, his temperament is different, you name it, it's changed. I realize these mental & emotional changes are probably normal, but to what extent? I've tried to talk to the dr., who is an Internal specialist and treats him for the Cirrhosis & Diabetes, about my concerns, but she doesn't seem too concerned about these changes. She's always said "he's lucky to be alive, after his liver failure", and that the Diabetes and mental/emotional alterations stem from that. If she's right, I accept that, but how do I live with it, or help him live with it? Is there nothing that can be done for him?
Has he lost his will to live?

At first, he refused to check his own blood sugar, insisting that I always do it for him. Didn't matter if I was gone taking my son to school, a dr. appt., or off taking care of my 90-yr.-old MIL (YES, I take care of her, too), my husband called me to come home and check his sugar because he felt shaky, or to fix him a milkshake, or whatever. If I'm in another room, which I usually am because he has taken to literally LIVING in our bedroom, in the bed all day&night, he'd call for me to do everything that he can do himself. Trying to be understanding & patient, I tolerated it for weeks, thinking he'd get better. But he didn't. The more I doted on him, the more demanding he became; not to mention more short-tempered and harder to live with. The kids were avoiding him because they didn't know how to act around him anymore. Actually, they still do that, and I don't blame them at all. Anyway, one day I couldn't take it anymore, and I told him that he was a grown man, perfectly capable of doing things for himself, and that our multi-handicapped son was acting more independently than he was. (No kidding.)
He was hurt and surprised, but I must've hit a nerve, because he now checks his own sugar and will walk to the fridge himself. Before the liver failure, he was a very strong, independent, extremely intelligent, well-educated man. As much as the Cirrhosis affected him, his mental state seems much more affected since the Diabetes dx just a few weeks ago.

Does this make sense to anyone? Please explain this to me. All I want to do is help him, without losing my own mind. Too many people depend on me, and I already have bleeding ulcers, general anxiety disorder, hypoglycemia, and sciatica. I was dx'd years ago with each of these, and until recently, had little problems controlling them with my meds. My own dr. is concerned about the effects of my husband's illness on my health, but I can't stop taking care of him.
Any advice is greatly appreciated.

thanks,
Anna

ibake&pray · 11-24-2007, 09:04 AM

[COLOR="Navy"]Anna,
you have my sympathy and my prayers. It sound to me like you rhusband has decided that he wants the attention in the house..no matter what you are doing. Perhaps you did the wrong thing by waiting on him hand and foot after the diabetes came into play.

When my hubby had his heart attack at 44, he had a list of meds that he was responsible for, and they had to be taken every day. My first instinct as a mother and wife...and a general take charge person was to make sue that I was going to be there to give them to him and to remind him to take them every day. Then my mother's voice was in my ear reminding me that the worse thing that I could do to someone was to make them dependant on me for everything.... So I took a step back, kept my mouth shut-and that is a major accomplishment for me-and let him take care of his own meds and his own doctor appointmentments. I am more than willing to go with him, and I do, but this is his body, and his life.

What you may want to say to your hubby is....If you are going to chose to ignore your doctors warnings about how to live with diabetes, fine. But please make sure that you have plenty of life insurance with me as beneficiary before you get any older or sicker....then quit playing his game. Go about your life and the families, and let him figure out what he needs to do.

You can only be so responsible and you are close to your limit...he needs to grow up. He did it once, now he needs to do it again. When he does a good step forward, cheer him on, but don't argue with him and don't do things for him. He is chosing to live this way, you don't have to.

good luck anna, hang in there....../COLOR]

porterville · 11-30-2007, 04:17 AM

Hi Newbie

Welcome to the board. I am a newbie here to. I need caregiving. I have been very ill since June and I am finally becoming well. Something I am grateful for. But now, I find myself depressed. I keep e-mailing my friends without realizing it. My friends I keep calling all of the time without realizing it.

I know I must be chasing them away as friends. I do not know why I am doing this. Please give me some advice.

Love Ruth

ibake&pray · 11-30-2007, 12:45 PM

Ruth, why don't you check out the depression board? There are folks there who deal with depression all the time and might be better ssuited to help you with your problems.

goldyfm · 12-08-2007, 08:48 AM

Hi Anna, I do hope you realize that you are doing a wonderful job, even if you feel unappreciated at times. I know my late husband was accustomed to my waiting on him hand and foot and as embarrassing as it is to admit; I was the instigator of that behavior early on in our marriage. He had a health scare just two weeks into our marriage and basically his personality and security level were changed from that point on.

I am glad to see you putting your foot down, as (1) you should not be expected to do for another what they can do for themselves, and (2) the exercise and having some contribution to your own care is good therapy. I would suspect your husband is struggling with his own security and may not be fully accepting of his health condition and prognosis. I would see if you could get him interested in some time consuming hobby or a support group as being couped up and not going out is a bit boring and more likely contributing to his helplessness.

Talking with others who are facing health issues like his own can be therapeutic not only in learning coping skills but also making new friends and giving one a renewed spirit of being able to contribute in some small way to a newcomer. Online support groups are great avenues to voice your concerns, as you already know. I would suggest that to him and even a hospital based one if that was doable, it would get him out to interact with others where he could see how they are coping and exchange ideas for the monotony of being mostly homebound.

As for yourself, I would enlist the aid of others to give you a break. One cannot continue to push themselves without endangering their own physical and mental health. If someone offers, take them up on it! I know how just a few minutes to go sit quietly at a coffee shop or browsing through a bookstore can help with your own spirit. Asking for help was an uncommon trait of mine, but when I truly needed a break, I was proactive in that area. I will be thinking of you and your family. Take care.