Hi, I am new.... and basically need some support. I myself am in a wheelchair for going out and I nurse my husband, Brian with Alzheimers. He is in hospital at present... but due home soon. I am waiting for a hospital bed to be delivered to nurse him in and a special mattress as he is so very thin. Swallow gone... everything has to be liquidized... drinks at pudding consistancy and fed to him on a spoon.
My main problem is, and I have never mentioned this to anyone... I get frustrated with him at times... especially trying to get food and drink in him... and then feel very guilty about it! He wakes sme up a dozen times in the night and I am tired out with lack of sleep anyway... so I yell... Something like... 'For Gods sake Brian... go to sleep... I have to look after you all day tomorrow and I am soooooo tired'. That's as far as it goes... I just yell.... Then feel really awful as I know it isw not his fault. Does anyone else react like this.... Would like to know I am not alone here?
You are most definatley not alone. First and foremost, your human, obviously compromised yourself and I think your an incredibly brave woman to be where you are now cause I ran screaming from my situation wayyyyy before it got to this stage.
My hat goes off to you.
Your feelings of frustration are exactly that. You want your life back. This is NOT how you anticipated your retirement eh? At least you understand he can't help himself, and that he's not doing anything on purpose just to get to you. That's half the battle won.
We have all gone through the entire gamut of emotions that this disease brings out in the carer. You are not alone.
I would however, encourage you to get some respite care in to give you a break and let you recharge your own batteries. There is no shame in asking for help, there are no awards in devoting yourself 24/7. You need to look afte YOU too .. because if something happened to you who would look after him?
My Mom has been a difficult person for me to deal with since I was, oh let's say 18 months old. But I've been the patient, dutiful daughter.
Well, I'm finding that the longer this drags on and the more drained I am, the more I want to yell. I haven't yet, but I can't tell you how many times I am biting my tongue.
She denies there's anything wrong with her so instead of being appreciated, she sees me as just a big problem. I'm not taking her out to eat 2-3 times a week, I'm the person who caused her to lose her license so she can no longer drive. (I'm actually not, but that's beside the point. Reality isn't our issue.)
I have help. She's in assisted living so I only have to deal with her about a total of 20-22 hours a week. But I work a 50ish hour each week and am trying to have a life of my own that I won't regret. When you pile one thing on top of the next, it just starts to overwhelm.
Try to get yourself some help. You deserve it. And, maybe just take another minute to talk to Brian when you are not stressed. Tell him that you know you lose your temper and that he should just blow you off when you do. I understand he won't understand, but maybe it will make you feel better to talk it out to him. IT couldn't hurt.
You really ought to be able to transfer your husband to a nursing home right from the hospital, instead of bringing him home. You obviously can't cope with him mentally or physically any more, and I don't blame you. What about Hospice? He is surely eligible for hospice care if he can't swallow.
My Mom is roughly in the same conditios and has been in a nursing home for over a year. I don't know where you find the strength to cope at all - a few loud or harsh words mean nothing, and he will forget them in a minute. I have gone into another room and screamed into a pillow when Mom was driving me crazy, before the NH. It is normal for you to be frustrated. You are sleep deprived and it is eating away at your own health.
Please talk tothe social worker at the hospital and tell them you cannot deal with it any more. You need a reprieve, not only respite ..he needs permanent placement in a 24/7 facility and you need sleep, a reduction of pressure, and your own life back. Do it. You are not harming him in any way by doing so, because he hardly knows where he is at this point.
Good luck. My prayers are with you. Go for it .. don't be a martyr any longer. No one thanks you for it. Other family members were way less than supportive when I lived with Mom for 5 years .. criticized me for 'exaggerating' her condition, told me to give up my job and stay home with her, told me much of it was my fault because I 'wasn't giving her enough water to drink' or 'letting her watch too much TV' .. but all that is thankfully over!
In reading your post I felt like you were transcribing my
words to my husband. I frequently found myself yelling
and/or being nasty and sarcastic.
It was at that point I realized I could not do this alone.
Please get help.
Martha's suggestion of hospice is excellent. Get in touch
with the social Worker at the hospital he was in and see
what she/he can come up with.
Don't wait. D something about this today!
You have been in my thoughts. I hope you find the time to give us an update on how you are doing. I know this is a very busy time for you but we care and want to know you are getting the help you need.
It is so hard emotionally to deal with losing the person you love right before your eyes. I had a christian based ministry assisted living home near my house and finally had to move my Nana there. My frustrations were high, dealing with a divorce, being a single parent, losing my mother 2 1/2 years before and little to no help from family. Eventually she became combative and mean. This lady was a true southern belle and the words she would say I have no idea she knew! She would even try and hit me sometimes (and sometimes managed to make contact). I would get her back to her room and walk out to my van turn music up really loud and just holler/cry/and beat my seats with my hands to let out my frustration and anger at all the loss. It is so imperative to have someone help you, and I was eventually able to get hospice to come in to help. Because she really belonged in a nursing home, I begged them to let her stay there as she got the only joy in her life from their daily ministry, and singings, and bible readings. They agreed since I would come in before and after work ( I was teaching), and hospice and church volunteers took shifts. It took a load off my mind to know that she was being helped as much as was possible, and allowed my stress level to drop some. This of course allowed me to have more patience. It is almost impossible to deal with this alone and not lose a part of yourself along the way. Seek out all the help you can and don't beat yourself up for losing it at times. Fortunately she never remembered her unbelievable behavior or the times I would cry from sheer frustration.