I live and help my mom and dad who is suffering with the dreadful disease. I try my best to keep things going., The problem is my bipolar is getting worse. I don't know if it's because my hep c is causing other emotion feelings. like like the causing all these feelings I have this morning. Being a caregiver is a big job - responsible for their meds, taking them doctors, hoping they don't fall, dealing with their angry and the memory problems. I've bee taking care of them since 2009. I never know what's going to happen next. Same with me.- this illness triggers my illness.
Welcome to the Caregivers Forum. I am so very sorry to hear that you have so many challenges with being a caregiver for you parents. Many of us can relate.
You should be very proud of yourself for even trying to care for both of them No one can imagine how difficult to job is until they have been there. Your challenges are even greater with you illnesses. I took care of my father for almost eight years in my home until his recent passing. I also care 60-70% of the time for my mother, his x-wife. I have multiple physical problems including chronic pain and disabilities. So I know the compromising position you are placing your own health in while you care for your parents.
If it helps we do understand and empathize with your position. I am fortunate that my father did not have alzheimer's, however my mother is having severe memory problems.
Saying that caregiving is a big job is an understatement. Do you have the support of another sibling or a Home Health Care Agency? If not please enlist as much support as possible. Your need to care for yourself FIRST before you can be an effective caregiver.
Do you have an opportunity for Respite? Again if so please take advantage of it. I am not certain of all the assistance that the state of TX offers but I know that they do offer many of the programs that my state of WI offers. If you haven't please talk to your local Human Services Office. Any help you can obtain will be beneficial.
Don't feel guilty if you can no longer care for both parents, You must be well physically and mentally in order to take on and continue this huge task.
Of course they are angry but understand that they are not angry with you. They are angry with their loss of independence and what is happening to them. Even though you may understand that completely it is still very difficult to deal with their anger, memory loss and the physical demands and problems that goes hand in hand with caregiving.
Keeping tack of medications, running for numerous medication refills, worrying about their safety, transporting them to and from appts, handling the wash and cooking and all the other things that go along with 24/7 caregiving is over-whelming. There were days I didn't know If I could make it through one more.
What I can tell you that if you are able to continue to care for your parents you will never be sorry for the sacrifices that you are making. I do not regret one moment of the time I gave caring for my father. It's the greatest gift you will ever be able to give them. But I would imagine that as the disease progresses it will become next to impossible to care for them both without a lot of outside support at the very least.
Do your best, as I am sure you are but don't be afraid to say you cannot continue your role. Your parents would not want you to put your health in jeopardy to care for them. Remember how very much they love you. They just may not be able to express that as well as they would like to express it or was once able to do.
Please tell us more about how you are managing. My heart goes out to you as does my admiration and respect. There are very few children that even try to keep their parents at home. Bless you for all you do.
Wow, thank you so much for your encouraging words. I really needed that. There's a caregiver site http://www.thefamilycaregiver.org/caregiving_resources that I have joined to get support and education.
It's a great relief that I am not alone. At first, I thought I was. Everything happen so fast. It's not like we watched him get t his way the accident took him and it was so quickly. None of us knew what to expect. One day dad was okay the next he was in the hospital not know who he was. He had hallucinations, and actually thought I was his wife. He didn't know who mom was and that was very upsetting to her. He was he the hospital for a week and was delivered to the nursing home the next week. There two days and had a stroke and went to the hospital for another week where his hallucinations were terrible. He actually thought he was picked up by a helicopter every night to some unknown place. Dad had a stroke and with tests found out he had vascular dementia. He also has a heart condition. Through this whole ordeal I was there by his side. When went back to the nursing home he was frightened. He would wake at night and try to leave so I decided to stay a few nights until he got use to the place. For a while I was his wife. He did not know who mom was. He saw his mom, sister and other siblings who are passed. He would call in the middle of the night to come and get him. Or, to bring his teeth glue. Always about the teeth glue.
I had to make a decision. He seem to depend on me so much. I was staying with mom because she couldn't drive and she has dementia/bipolar. She needed the same support. I found her crying in her chair rocking back and forth - " I can lose my daddy." I finally made the decision. I had to leave my job and move in with them. Plus, I had to give up my apartment and the belongings in it. I had no one to help me move. It took me a month to get what I decided to keep and had to let the large items go. I couldn't carry them. Additionally, I was breaking my lease and boy did they put it to me. I didn't care I had to do it.
The last part of changing my life is I had to file for bankruptcy. I started a new segment of my life as a caregiver for my mom and dad.
There is more to all of this - I have a blog where I wrote the story. Now, it seems that I'm getting ill and eventually will need to go and take care of me. But in the meantime, I'm their daughter and I will watch over them. My brother doesn't seem to want to get involved unless he has to. He just says if I moved he would try and get them to go into a home. My dad says "Over my dead body."
You poor dear. I can only imagine what you felt. I think I would have done the same. I can read the love and concern for your parents in you post. How very heartbreaking. You were and are very brave.
Although my dad's mind was sharp to the very end he had moments that he called me by my mother's pet name. I look so much like her when she was younger. Although they were divorced by her choice, she was his first love and he loved her till the day he died. It was heart retching.
You have given up your life to care for the parents that you love so dearly. Now what? As you lose or if you lose your health this will be a huge impact on three lives. Is there short term assisted living for your parents? Would a month allow you to recover enough to return to the current living situation or is this beyond a Respite?
It seems to always be that there is one sibling taking on the entire responsibility of caring for a parent(s). I think there are numerous reasons for that scenario but none of them seem to matter when you are the one that is the caregiver. My grandmother use to say, "Why is it that one parent can take care of five kids, but five kids cannot take care of one parent?" It was a great question, one I could not answer. I also took care of my grandmother in my home until I could no longer physically care for her.
If their is anyway that you can get some time away to heal, please try to do that. Your "job" is huge. I don't know the specifics behind, "I'm getting ill and eventually will need to take care of me" but would a short respite help prolong the time you have with your parents? I would not have believed the differance that the two short Respite periods made in my physical and emotional health. Granted I am not bio-polar but my physical limitations and chronic pain is great.
You did not say if you have consulted your local human services department. The last 14 months my father was on first Home Health Care and than Hospice. Both were great support systems. Hospice was thee best. If either if your parents have a terminal diagnosis they should be eligible for Hospice. I originally thought that Hospice was only for the last few months of ones life but that is no longer true. Many requirements have been changed. Our local Hospice has clients that have been in the program for three years. It is through them that I was able to take a short Respite several times and at no financial cost to me or my father.
You are right, you are not alone although it may seem like that at times. I had an internal "clock" that seemed to be connected to my father. I always knew when he needed me in the middle of the night. He never had to call me. I would sit right up in bed at 2,3 or 4:00 AM and know that he needed me. That 24/7 caring takes a huge toll on healthy ppl, let alone those of us with physical, emotional and mental challenges. Don't run your batteries completely dead. A re-charging may be all you need. Is your brother able or willing to come and spend time with your parents, thus giving you a much needed break?
I hear myself in your words. I do understand your love and dedication to your parents. I also understand the need to care for one's own health first.
I pushed myself too hard, too long. During the final days of my dad's illness I tugged and lifted on him (alone) to reposition him in bed. It's a long, complicated medical story that I will not go into here but I have undone repairs that were made to my body that in all probability cannot be repaired again. My dad would be crushed if he knew this. But his final wish was honored. He never spent a day in a nursing home. I don't know if I will be able to say the same for my mother.
We are here for you. Again I cannot tell you how much I admire all you have done and continue to do for your parents. If you are forced to give up your commitment due to your health status NEVER feel guilty. You have done far more than most children ever even attempt to do. You must always remember that. And don't allow anyone to try to make you feel guilty, unfortunately you'll probably do enough of that on your own.
Hug your parents whenever you can, tell them how much you love them, even though it is obvious that you do. My only regret is that I wish I would have hugged my father more. Now I would give most anything to be able to hug him again. In the end he went to quickly. I honestly thought I had at least this summer with him.
Take care of you. Find time for the little things you enjoy and above all don't forget to be good to yourself.
You and your parents will be in my thought and prayers. I'll look forward to hearing from you again.
Your a very nice person to have her hands full herself. Everything you say makes a lot of sense so I listened carefully. Plus, it seems we were both on the same parallel road.
I love both of my parents and that's why the decision to move is a hard task. My mom always says they will be okay that I need to live my own life. But then she will turn around and tell me how much she depends on me and wouldn't know what to do without me. Duh!
For the last two days I've had a bipolar attack. I don't know any other term. Just recently, I got home from my vacation. I went to see my son in Wilmington, NC and rented a place on the beach it was great. Peace and Quiet. When I got back my mother was hugging me all over the place. Even dad was happy to see me. But I just wanted to go to my room. I just didn't feel right.
The next morning I did the usual go to the den and read the paper with them. My mom has a bad back but got a big shot in it by the doctor and she felt really good that morning. She was talking a lot. I mean chatter, chatter and it was getting higher and louder. My ears and hand was feeling anxiety, my heart was racing and my skin started crawling. I had to leave the room. I haven't had this kind of anxiety attack this one was different. I had to go to my room. I took a couple of anxiety pills and stayed in my room all day. The next day I was still having a feeling like pressure and dizziness. I have no idea what it was.
Could it of been because of the sonogram I had. I hep C and they were checking my liver - I've had hep c for a long time.
My mom had come to my room and gave me a big hug. I haven't had one of those for a long time. I had mentioned once to her that's it's hurt to give so much and not get anything in return.
I appreciate your communication. May I ask what your illness is. I guess I could check your profile. But I wanted to ask you. I want to be your friend it seems we have a lot in common.
hi wanted to join in and say i know all to well what it takes to care for a alz person.
my mom has it and both my parents live with us and its so hard on me.
my dad is 76 and does not belive my mom has this he thinks she does the things she does just to be doing it, but its not true. he tries to understand but just cant so he fights with her all day and she dont understand why hes doing that.
she calls my dad her fathers name most the time and worries because hes not there even thought he is. its not a easy job, i have 3 sisters and not one of them will help me, me and my awesome hubby is dealing with all of this and yes i to have anxiety. so far good not on meds for it but some days i feel real close to taking a few.
i to do every dr appt /store/bank what ever they need and it takes a lot out of me but i love them so what can i do. i cannot throw either into a home, they took really good care of me and my sisters when we were little .we never had a worry so i will try and do the same for them. roles have changed for me am now the mother /father and they are my children.
i pray you get better and get some help for yourself and them. Barbara
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