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Frustrations of living with a 2 year old or with a disabled DH....

Sunday, June 24, 2012

I really, really wanted to focus on a certain movie today-start to finish.
things started off great but soon fell apart.
My DH is disabled and cannot focus on anything for very long even though it was a movie he seemed to like. It was a very complicated movie and if one did not pay attention, the plot was easily lost.

Eagles Dare

Since he can't concentrate for long he continually interrupts at crucial points--(may I say he has a real knack for recognizing the most crucial moments!

Same when watching the news every night. It is similar to having a 2 year old around when you are on the phone.

He points at the cat and describes what the cat is doing--like 10 or 20 times during a movie! Yes, I love the cat and I do think he does cute things but......

If that doesn't distract me, DH has other tactics--today he spilled his full cup of coffee! It was a giant mug and I just left it be spilled till later. We have no rug....

Sometimes he can't find a urinal.

Today he was hungry. I said go get a bagel. He went off to the kitchen grumpy in his motorized chair. He screamed that he couldn't find one.

I said OK get rye bread it is on the kitchen table. i promised to make his lunch at the next commercial--and I did that.

The movie I wanted to watch kept you on the edge of your seat and had all sorts
of twists and turns that you had to catch if you wanted to follow the movie.

Even at the last scene where I knew(and told him ) there would be one last twist--he was asking me questions!

And his best trick yet has been developed lately. Getting his pants wet hurts his skin eventually through the day. That has been happening more and more. Not incontinence but spilling the contents in the process. I have explained why his skin hurts. I have explained how to do this carefully. It did not used to happen at all. I have adjusted his pants so the legs are baggier. I have made everything available. I have provided paper towels and dry and wet wash cloths and vaseline. I swear this is a new tactic to get me involved in doing something for him. Conscious or unconscious...it still is a way he can demand my attention.

What is the most painful way I can kill him? just kidding , of course. Chris
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    I retired after 20 years of working in social services and activities on an alzheimer's unit in a nursing home. Has your husband been diagnosed with dimentia or alzheimer's disease because that is exactly how our residents behaved. He is exhibiting attention-seeking behavior, and since you are the only caregiver, every action is aimed at you. There is really no sense in arguing with him or trying to explain things to him, hoping to alter his behavior. Instead, you have to alter your methods of dealing with him. He obviously is unable to be trusted with liquid. How safe is he with his motorized chair? Has he attempted to leave home in the middle of the night, searching for his parents or trying to go to his former job? Unless you realistically address this situation, you may find yourself in a dangerous position. Call his doctor, an alzheimer's support group, or your local hospital for relief. Good luck to you.
    2092 days ago
    Chris, my prayers are going out to you. I just can't imagine what you go through in just a normal day (whatever that may be for you) He does sound like he's a child, has this been happening for a long time or does he feel for some reason he needs more of your time? You can't give him 24/7 and expect to have time for yourself. I think having someone come in for an hour or two would give you a little 'me' time. If not, there's always that "Chinese Water Torture". lol Seriously, hang in there and God will find a way to get you a little time for you. (hugs) Noel
    2092 days ago
    Because I am a teacher, I look at this thinking about ways to shape his behavior in directions that I need, which in teacher talk usually involves negotiation and clear rewards and consequences. For example, (and I'm just inventing something for an example--you'd have to invent something based on what you know about him)--John, I really want to watch this movie from start to finish. I spend most of my day caring for you, but I need time for myself. If you are quiet and allow me to concentrate and enjoy the movie, then I will play 2 games of Scrabble with you this evening. If you are not quiet and keep interrupting, then I'll have to ask you to leave the room.

    Or a counseling talk: John, You know I love you and I've been caring for you 24/ 7 for two years. Most of the time I am happy to help you, but lately your asking for help when you can help yourself is making me frustrated and angry/ discouraged. I need your support in making this arrangement work. Without your support, I may become sick myself because of all the stress and exhaustion, and then I won't be able to take care of you at all. I need you to help take care of me, too, by doing the things that you are able to do, even though you may not feel like doing them, or you may get a little frustrated at first in the process. Here are some examples: avoiding wetting yourself; looking for food in the kitchen even though you might not see it at first glance. In the future, if I know you can do something, but you refuse to do it, then you may have to suffer the consequences that you would have suffered anyway if I were not here. I need your support, and can't do it all. Will you make a commitment to do the things you can do, so that I can keep my sanity and my health by helping you with things you cannot do?
    2093 days ago

    Comment edited on: 6/25/2012 6:50:57 AM
    You know this is different from my husbands behavior and yet the same. They have so little control over their lives now they need to control us and make sure we still love them and are paying attention. I pray you can get the help you need.
    2093 days ago
    Document everything, and get a respite care provider. It costs a little, but it is so worth it in the long run. It will give you some time to yourself to do the things that you want and need to do. You should have one come in at least once a week. Check with your local hospital and see if they offer home health care or respite care. I used to work in that field myself and now have a foster home for DD adult men. I have a respite care person come in once a week to take our client out for the afternoon and evening. It is a big relief to see him go out the door and I get the house to me and hubby for the evening. It is important to your mental health to get a break.
    2093 days ago
    hummm... such a rough debate... how do you care for the loved one YET still care for yourself.

    2093 days ago
  • MOMKAT4310
    Maybe you should start keeping a log, define each behavior, chart for frequency, intensity, and duration. You need a better picture of what is happening. This is what we do at school, and I know you can do this. Also, look for antecedents - what was happening just before his behavior (I mean a behavior that is non-functional for you.) These behaviors are very functional for him, and he is getting big pay-off. It could be a slow trigger (something happened earlier in the day, or a fast trigger, something that just happened). This kind of knowledge will help you define your behavior and reactions. And this will be totally useful for health care providers. ( as an example, does this happen more when you are home being the care provider, or more when an outside care provider is there?) Look at time of day, proximity to meals and other normal body cycles. You need more information for yourself and to possibly get additional help. If you can isolate a cause, you may be able to develop a plan for a more acceptable alternate behavior. Did you do any students with behavior issues? This is planning for a "Fair Pair" behavior trade. I do understand, and life is sometimes tough. Hope you have a good night.
    2093 days ago
    Hang in there! It sounds as if he is also becoming senile and if that isn't the case, you may want to have him checked out to see what is going on because something appears to be. Is ther any way you can record your movies so you can stop them for interruptions?
    2093 days ago
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