Parkinson’s Disease and Emotional Abuse


Crying child

Where do I start and end this? The past 24 hours have been maybe a bad dream, but my body feels to weak to have it anything else but real. It started last night, as I have already posted, at the DQ, with Al not getting his own way.

We brought it home and Al decided on his own, to carry the turmoil into the evening. After his idle threats and temper tantrums, my body felt so scared with goose bumps, a hot feeling all over, and tense neck and shoulders, I broke down and forced him to go to bed, and then went to my phone and called a friend, that I was hoping would help me to calm down.

We talked and it seemed to help and by the time we hung up, I was able to smile again. I decided to go in and check on Al one last time before I checked into sleep land, and he scared the crap out of me. It was dark except for his night-light, and I was standing in the door way not yet in his room, when I heard him say, what do you want?

I know that I jumped a little bit and then told him I was just checking to see if he needed anything and he claimed he didn’t need anything that I had to offer. I saw him stirring a lot in the bed, so I walked over to him to see what the problem was, and he had a hand towel at the side of his body and it was wet.

I asked him what was going on that there was a wet towel, and he said he was wiping up pee. I told him I was going to pull the covers back and check the bed, and it was wet. We talked about the urinal, and then I went so far as to replay how he has to use the bed remote to sit up in the bed before he can use the urinal properly. He said he could not. He said that he could not get it in, so as we re-enacted the scene, I saw that from him getting older, there was a shrinkage problem with his personal body part, and knew then that this was a definite problem in bed.

In the end after talking and him still being snippy with me, I decided that it would be better to wear a brief, in order for him not to have to try to make something work that would not work. I had him roll from side to side as I changed the bed pad and chux pad, and then I placed him in a brief.

He called me some choice names as I made sure he was comfortable, dry and warm and then turned and left his room. It was then about 2am. In my room I could hear him through the baby monitor still calling me names, and I tried very hard to ignore it but my heart and soul were crying as this whole evening had broken my strength, I usually can manage to carry.

I tried to go to sleep but he was noisy, and he never went to sleep until 5am this morning. To say the least, I did not feel good at all today physically or emotionally, and to top it all off, he was still on his roll from the night before.

I had decided this morning, that no matter how much I love my brother or how very hard I tried to please him, it wasn’t going to ever work. It would take a miracle from God to change the despair and sadness in this morgue, we call home. Because I loved him so, I made up my mind to place him. Maybe if he didn’t see his dad in my face, he would maybe find some happiness in his life.

A therapist leader came to our house and he instantly took her back to his bedroom and tried to convince her how mean I was and that his room had plenty of room to hold more cars. I instantly grabbed her and pulled her to the living room and briefly explained what had happened the night before at the DQ, and that he was trying to play her against me, and she understood.

He made a big mistake by telling her he did not want to live here and that he wanted to go to a nursing home and that he just wanted to die, because she took this news back to her head nurse in charge.

After she left, he decided to continue his badgering of me, and I stood up from the couch and told him I didn’t want to hear anymore talk, and I wanted him to return to bed. He fought me but I won and I got him safely placed in bed. He went to sleep and I went to the couch and fell into it with a large headache and tears running from my eyes. I was exhausted and prayed that he would sleep for a nice period of time.

God must have answered that prayer because he slept right through lunch, and by this time, I realized that I had taken my own diabetic medications in the morning and had never made it to my own breakfast, and now I was skipping lunch also, due to wanting to sleep.

The phone rang and woke me up and another therapist wanted to stop by in an hour or so, so I said alright, and at the final moment, I went and woke Al up. I was still dragging and Al made sure he told the therapist how bad he had it here and that he was miserable, all because he was still throwing a fit about the car at Wal-Mart. By this time, it was four pm. She is a very good therapist and worked with Al’s muscles some, but the main topic was Al’s attitude towards his own dad and how he still carries the bitterness and hatred of his dad, and how he pretends that I am now his dad and so he treats me exactly the same. The therapist listened to him and talked and gave suggestions to him on how he needed to drop the past, and live for today. They talked about how I did love him and that I was good to him, and she explained that his sister does even spoil him, but he did not buy any of it.

She explained to me that he has a block in his brain and he is stuck in the past with the emotional abuse of his father. He went on to tell her that he wanted to die, that he had nothing to live for, and that he wanted to go to a nursing home. She tried to talk to him about how nursing homes are so much more restricted than being home, and that he would not receive the love there that he does here, and in the end, with her holding him in her arms, she and he were crying, and I was sitting on the other end of the couch crying myself, he made a comment that he did not deserve anything in this world, that he was a bad person, that dad had mistreated him and he just wanted to die.

His body was sobbing and shaking and my heart was breaking, as this scene unfolded. The therapist spent a lot of time here off the work clock trying to help Al see that he is worthy, but at this point I don’t know if it helped or not. All I know is that she tried, we all cried, we all know the problem, but the only one that can fix it all is God and Al.

41 thoughts on “Parkinson’s Disease and Emotional Abuse

  1. What a difficult, challenging, probably highly frustrating day. I hope you continue to take care of yourself, and are able to make the best decision for both of you.

    Like

    • i hope so too Over……………………I am still exhausted even though I have slept too much. My brother may have helped or hurt himself by telling others he wants to be placed. time shall tell me what happens. thank u for understanding

      Like

  2. Terry, neither you nor Al can take many more days like the last couple…Just remember that when God closes a door He opens a window..(or have I got that right) In any case you know what I’m trying to say. I know you want it to work and you are trying and there is much prayer….so we will see what happens and what you feel God is saying in all of this….Prayers as always…Diane

    Like

    • thank you Andrea. It is harder than most cases I have dealt with in my career, because he is family, and he and I are the only two left of the family

      Like

      • That makes a lot of sense. Family situations can be a lot harder because you don’t have the luxury of stepping back and taking a breather every once in a while. Plus there is a much deeper emotional connection.
        I’m so glad that blogging has brought you closer to a group of people who understand and are in a similar place. What a comfort you all bring to each other.

        Like

  3. Terry,
    I am so sorry to hear about all of the difficult days you are having. I know that it is hard but please try to remember that Al’s anger is not at you- it is at his disease and at the unresolved hardships of his past. Too often, in our lives, we lash out at those we love and trust the most. If it is best for Al to be cared for in a nursing facility, please know that is not a failure on any one’s part. Sometimes it is best for all involved as it may allow you to be his sister rather than his nurse. Try to take one day at a time- the best option for his care will become evident with time. If he is going to remain at home, finding help so that you can get some respite is essential for your own well being. Always remember that you need to take care of you in order to continue caring for others.
    Terre

    Like

    • thank you Terre for this comment. I feel from what has been said that there is about an equal split, some nurses feel he should be placed and some therapists think they can help him. i do agree that this is going to resolve itself by others more than from me. Al is bold, and is not afraid of showing others his actions anymore

      Like

    • i have always believed in God Julie, but where oh where is he, now that things in our home are getting out of control. i do know that home health has been extended to nov 12, then after that it is all over. i am going to ask one person that i know if they would like to be hired to help out here with Al and me, and if they do not, i was given a number to another home health care that i can pay for their services our of our own money, because I can not do this anymore alone

      Like

  4. i understand that our past experience has a huge effect on our behavior and have helped many people through therapy to deal with that past and move forward. while i am so touched by the abuse al was exposed to and feel sad for you both i have to say that he is not going to change and you deserve some happiness in your life. he has a terrible history and a horrible disease. he did not deserve either. you do not deserve to be disrespected and treated this way. you deserve to get a good nights sleep. you deserve to wake up and have coffee, not change and wash sheets every day because al is not able to go to the bathroom or use a urinal. you deserve to be appreciated. please consider placing your brother for the good of both of you. he would receive the therapies he needs, he would have staff available 24/7 to meet his needs. you could visit as often as the two of you are comfortable with. you could take him out for treats. you are not taking care of yourself and need to think of what will happen if you have a stroke or worse.

    this is not to be tough but as a friend i care about you and hope you will consider my concerns.

    Like

    • hi Sandy, it is possible that Al has placed himself in a position of being placed by the things he said to the staff this morning. i was told also that home health care will be here until Nov 12. after that it is over. they gave me a number of another home health care that is reasonable priced, and may come here. i also have one person that i am going to call. i do know that i can no longer go this alone, and if i can not get the help, I will place him myself. i feel for what he has suffered, but i want to live, and i hate to sound selfish, but i would like to work again, date again, and get some exercise

      Like

  5. I am so sorry it continued, I had hoped it would end. At this point, I feel it is out of your hands, you’ve done any and all things to make it work, it is not a failure, it is a lack of understanding that you are not your Dad. But sometimes the easiest one to lash out to is the ones closest to us. Sometimes, while we struggle with the decision, it is taken out of our hands, it may appear this is the case. My prayers are with you, and you know the number, use it. HUGS
    Jo

    Like

    • thanks Jo. I just put him to bed, and he is in there crying and saying he is so confused about everything. after spending about ten minutes trying to explain, dismiss, i felt myself just wanting to scream. i reminded him i could hear his words if he needed help and i left his room now. i m going to my bedroom . nite

      Like

    • thank you Ivonne. Something has to be done NOW! He woke up all confused and I can’t take it any longer. I am going to try to get someone to come here for respite care for me today!

      Like

    • it seems to me that he is getting so confused. i don’t know if this is dementia or what but i am going to be working today on getting respite care for me. thank you Apple for being here for me

      Like

  6. It takes a lot, I mean a lot, to bring me to tears Terry, but this post has done just that. I feel so overwhelmed by what you are going through and so privileged to be reading it, pain by pain. What an awful time this is for you right now. I can’t even begin to think of anything I could say to make it better. I will pray, of course, as I always have been – but this is so heart-rending I don’t know where you’ve found the energy to write it down.

    I think you’ve said it before but I’ll say it now in the hope that maybe you find some comfort in this, but Al is not your Al any more and the hurtful things he says and does are not really about you or against you, even though he uses the words that seem to point at you. I hope you can hold on to that.

    Like

    • I am so trying Ken, but I can take no more. I am too tired and too run down physically. I am hoping that I receive a phone call today. God may have used Al in his own release from this house. It is so difficult to make that phone call to start a placement when I love him so much, but by Al opening up, it may already be done. thank u so much for this comment, and while things are hopefully beginning to change, I will cling to the knowledge that this is not Al that is here with me, but a disease and dementia, and a big part of his dad

      Like

  7. Hun it has reached a point where Al really does need to be placed and if he has taken the decision out of your hands with his comments then maybe that will ease your pain at it happening, things cannot carry on as they are. I know you want to care for him, I know you do not want to place him but it is time for the facts to outweigh emotions, you cannot physically care for him without seriously damaging your own health and god-forbid something happens to you what will become of him then? Do you thin any one else in the family would visit him, make sure he is well cared for? Will anyone else check up he is recieving proper care and attention? In looking after yourself you are not letting him down you are protecting his interests. yes he is frustrated and angry but how much abuse are you willing to tolerate? the verbal abuse is getting worse what happens if it steps up a level and he physically lashes out at you? I know you will say he wouldn’t and if he were himself you would probably be right but can you honestly put your hand on your heart and say with the way this disease is affecting his personality it won’t happen?

    I know sitting at a computer thousands of miles away the decision is easier for me to say than it is for you to make but maybe because we you followers can say it because we are not emotionally involved in the same way. We have followed your struggles and can see the deterioration in his mental state and attitude towards you and our hearts break for you but I beg you please think about yourself now as ultimately what is best for Al is not letting him put you in an early grave

    Like

    • oh thank you Paula for this comment. I am waiting for phone calls from the head nurse, because as i stated he probably damaged his chances for remaining here. he woke up confused this morning and to be honest, i have appointments and a caregiver is coming in about forty five minutes and i can not wait to get out of here

      Like

  8. Hi Terry
    I’m so sorry about all of this. I can’t help, but to give an outsider’s perspective…
    Al does still love you, but the blockage in his brain is making you seem like your father to him. This is not your fault.
    You do all you can for him but it probably isn’t enough, you are just one person, this isn’t your fault either.
    If he does get placed, it is at his instigation, not your fault either. If you keep him home longer and end up placing him (and I think you will have to eventually) that would not be your fault.
    I think you may have to face that you have done all you can for him and now he needs the help of others. On the other hand, maybe you will get one of those good days to confuse you. Either way, don’t leave it too long before you place him and risk your own health. Once again, I’m so sorry. I don’t mean it to sound like I think you need to place him immediately, I’m just worried that you would blame yourself for failing when he finally gets placed. You are not failing, I think you have the patience of a saint.

    I do understand that there are costs involved too, and I bet they are staggering. You must do what is best for yourself, as well as Al, whether this is placing him or keeping him home longer.

    Look after yourself, I’m thinking of you.

    Like

    • Thank you Elaine. life is almost too hard right now, and today was terrible which i am getting ready to blog about. decisions have to be made at once for his safety and my sanity and health

      Like

  9. ‘I had decided this morning, that no matter how much I love my brother or how very hard I tried to please him, it wasn’t going to ever work. It would take a miracle from God to change the despair and sadness…’

    The above sentence caught my attention Terry. As sad as it may seem, if you are truly able to realize this and accept it, you are on your way to some eye-opening GOOD things in YOUR life. Only God can take away the pain, anger, and sorrow in Al’s heart and soul. Only God can heal him. I am like you, as I have mentioned before, and try to please people to a fault. But in the end, people can’t save people. Only God is able to do that. So, whatever you end up deciding to do, if you truly internalize that sentence above from your post, you will be freed from so much hurt as a result. No one deserves to be abused and no one is required to accept it, no matter what the circumstances. So be strong, be brave, trust God with everything in you and do what YOU need to do to bring peace to YOUR life, my dear friend. The love of God is and has been in your heart. Just don’t let your kindness cloud the fact that you are worthy of a fulfilling, non-abusive life. Taking care of yourself and doing what you need to do to be happy does not mean you’re doing anything wrong to others. Continued positive thoughts to you, Terry. Thank you as always for your openness with your posts. May God’s peace and strength be yours.

    Like

    • bless your heart for the wonderful comment. life is so hard right now, so many decisions and emotions in this home. i want it to all work out for all involved

      Like

Leave a Reply

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.