I’ve been taking care of him on my own since September and didn’t feel good today so I lost it. I’m slowly getting thru the red tape, he’s retired navy, getting help from the VA, but how do you keep yourself from losing it? We’ve been doing so well. I’m so sad and feel so guilty.
To the poster who just got married 7 months ago and is already caring for a family member-DON'T. Find a way to get your loved one into a facility. No couple just starting out needs this kind of strain on their marriage. You could be saddled with caregiving for years. It's bad enough that us old f*rts have our retirement years cut short but it's unthinkable that you young kids won't have the necessary time to grow together.
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To Justusjean,
Don't feel bad, you're human. So many feelings slaming together; anger, frustration, sadness, hopelessness, confusion, disbelief, etc. it's amazing that we don't explode. You are doing an impossible job. Go easy on yourself. Have your own free time. Do not neglect yourself. Give up being his caregiver if you feel you want to raise your hand to him or you wish he was dead. That's when you "hit the wall" and are unstable to be the caregiver.
Hang in there.
Do make sure you have your ME time. Time you can do things you enjoy. Time away from the care-giving is really necessary (even raising kids, they do take naps when they are little and overly-energetic but need closer supervision!)
Practice redirection and refocusing. You did not say that hubby is in that repetitive question/statement phase, or sun-downing, but those can truly be frustrating and trying. I explained it to someone who has not experienced this to a scratched record. The needle keeps skipping back and repeating the same section over and over until you give it a little bump and it moves along (until it finds the next scratch!) Redirection is like giving that needle a little push - change the subject, point out something on TV or in a paper, book or magazine, even something outside (even made up! Oh look, did you see that squirrel out there? No? Oh he was so funny!)
Most of all, cut yourself some slack. You are doing a job that is basically thankless and most definitely difficult. If you ever feel that you cannot do this any longer, do NOT feel guilty for that either. It is better for both of you if he gets care-givers someplace, where you can regain your health and well-being and then be his "best friend" again, not just his nursemaid!
I thought I had a way out recently when mom had 3 falls in two weeks. After each fall, she would stay at my house for a few days and then I would return her home. Each time she was with me, she never had any problem. By herself, she was falling. So the third time, I took her to the hospital to be assessed as to why she was falling. She didn’t trip on anything or feel dizzy.
They sent her to a nursing home with rehab capabilities after her 3 day hospital stay and I felt sure she could transition to long term once they witnessed her physical and mental decline. I was shocked that they discharged her after only 15 days!! She was no way ready to go home and certainly not to live on her own any longer.
So, I’m it. She is now living with me and my husband starting today. We have already had to change or cancel plans more times than I can count. She doesn’t seem to care that my life is being disrupted. She had refused in-home assistance before.
Now she will have in-home rehab for a certain length of time. I have applied for Medicaid to see if they will approve her for long-term care. Otherwise, I don’t know how I will deal with it all 24/7.
I am so blessed to have an understanding husbsand - we just married this year only 9 months ago.
I had all the patience in the world because it was not MY family member. There was no past history, no comparison of who they used to be and the emotion that goes with it. Not to mention knowing you punch out and walk away.
This is the hardest job I have ever had and I have had plenty of emotionally as well as physically difficult jobs. Lowest paying and most thankless job I have ever had as well.
Thanks for that very important perspective!!!!
I understand all too well. We ARE human, many of us had no idea the reality of what we were getting into. Caring and watching one of our loved ones (even harder when there was not a great past history) to keep a cool, even temper. They don't listen, they are in denial, they are demanding, they are argumentative, they have the memory of a gnat, they are shadows of who they once were and we are the ones trying desperately to do the right thing. We are not saints. I lose it with Mom pretty regularly then I feel awful. Sadly, I keep wondering how much worse it will get and how long it will go on? Then I feel bad again just for my thoughts. It doesn't help I am going through "the change" and my hormones are on a rollercoaster. It trickles into everything. Can't work anymore, get short with my husband, hate my siblings that have made me the enemy, no freedom, my God, just how are we expected to keep smiling, year after year after year while things get worse and worse.
My mother was no saint herself. She did many things that created a lot of hurt and trauma among all of us kids. She lost her cool PLENTY with us, and I can understand why she did!
I will struggle with my feelings when she passes, but part of me will feel relief. I cannot beat myself up for what I consider perfectly normal feelings. I am not an aspiring Archangel. I will process this all in my own time and way. Hang in there everyone, you are not alone and you ARE only human. We are doing the best we can under very trying emotional circumstances.
Sending you love and hugs. You are only human. I know you are doing your best but the daily care does take a toll. Even the kindest, gentlest person would lose their patience. It's so hard. There is a feeling of will this ever end?
Be kind to yourself. Take a break. Get respite care. We can't be all things to all people all of the time. I wish after my dad's stroke, I realized my limitations and made alternate arrangements for him. I tried to do what I thought he wanted and what I thought was best but in the end I feel like failed him. I never found the right balance.
I have to forgive myself for losing it with my dad two months before he died. I didn't know he was dying. But I was just so burned out. I started to talk about nursing homes and I think maybe this contributed to his decline. I wish I could go back in time and make different choices.
I didn't have the easiest childhood and I have always been proud of how much I accomplished despite that. I always felt strong and independent and capable and resilient. I don't feel like that anymore. I feel defeated, exhausted, lonely, guilty and like I can't make it up the hill. And it hasn't happened overnight. It's been a struggle and I've been able to handle it until this year.
This group always makes me feel better. Less alone and understood. I can say just about anything and I always get a genuine "me too". Even if I don't forgive myself, having people tell me that I should and that I'm human still makes it a little better. A little better didn't used to be enough, but these days, a little better is more than I expect.
If I knew how to keep myself from losing it and yelling I would tell you. But, I do know that it helps to have a community that I can access without leaving the house at any time of day or night that will understand. It doesn't make me feel less guilty or less sad, but it makes me feel less alone.
love your dad to the very end....that's what counts.....he will thank you for it......
I would get frustrated at times but not lose it and I would give her a long hug and that would calm the frustration as I know she was not doing this to me to "piss" me off but it was the disease. That also became my mantra "the disease, the disease" when I felt myself getting frustrated. It was hard and I had to work at it but in the long run I knew I had done the right thing. She could not change but I could.