Maybe


Gone but not forgotten

I am writing to help myself clear my thoughts, and maybe heal a little more. Yesterday, my son and his family who do spend a lot of time here with me, came down and we used our smoker to smoke chicken for supper. I am not kidding, the time it took to cook this meat, was worth the wait. It was so delicious!

This was sort of like our second Thanksgiving, since my daughter came from out-of-state to spend time with me. She brought only one of her daughters and her husband had other commitments, so I didn’t get to say hello to him at all.

It was a little strained. There have been issues, and through it all, I am trying to bring back the person that has been hiding for so many years, and to begin to say what is important to me, and stand on my own two feet emotionally. For some people, this feels odd, others may not appreciate it, and still others enjoy seeing my strength come back.

I just got to the point in my life, that I felt like I needed to quit saying things to people, that I didn’t feel right in saying, but wanted to keep the peace, so to say. Knowing I may be hurting others, is not an intentional thing I want to do, but being someone other than myself was also destroying me.

This morning, I didn’t feel well. My hip and back where I have the arthritis hurt pretty good. I have done much more physical activity, and more work in the kitchen, so my body is screaming at me to take it easy.

I wanted to go see Al because I had not been there for two days. When I walked in, he was sitting in his recliner, hiding behind those stupid curtains that cut you off from the world, and dividing your room, making it look smaller.

He looked up at me, and I received a half-smile. He seemed different, just as he has other times, and I asked him how he was and if he was in pain. He said he was adjusting. What does this mean, adjusting. We kept talking and then he broke down in tears. He cried so much that his eyes looked like he had Pink Eye. He is sad and lonely, he said, and part of him wanted to come home.

The sad part for me, is I did not want to show him how much I missed him, by crying also, and as he and I chatted, I realized that he now knew the facility was not going to fix him. He had received the news that his therapy was all over, and they had told him they could not help his PD any longer.My guts and heart wrenched when he said this, because this was his only desire to going to a new home. He was not making the friends that he had hoped for and one reason for this, was his memory remembers his eight week rehab in Florida, where the patients are much happier and know they are only going to be there a short time. It was easy to make friends.

Here, he is roommates with someone in their eighties, and his roommate  is cuddled in his blanket most of the time he is up and he naps a lot. Al and him do speak, but it isn’t the same kind of talk he is accustomed to.

He gets one other visitor, that I am not crazy about, and I won’t go into that now, as it is another blog in itself. No one goes to visit him but me from family, so he sits. I think he is getting depressed and this scares me. He told me about his aching legs and I asked him if he went to church today and he said he didn’t know about any church.

Even though I had talked to him at an earlier time, he had forgotten I think. After we talked, I let him put his slippers on , and I went to speak to the nurse in charge of him that shift. I explained that Al will not ask for his pain medications, and he doesn’t ask about social activities. I explained his mentality, and said that a routine had to be formed and then a habit would occur.

She said she does asks Al if he needs pain medications, and he says no sometimes. I told her how Al has grown used to his  pain, and then he only asks when his pain level is so high, he can’t take it anymore. She said if she ask him and he says no, then she won’t give him any. I understand this, but at home, I didn’t want his pain to get so bad, that his tears and speaking of death came to a head. I don’t know how to deal with this. You have the laws of the nursing department, and you have the mentality of a patient.

Al said if he came home, we would argue again, and he may be right. He said he feels out-of-place, and I defended that remark, by saying I had never told him that I wanted him to leave and live somewhere else. He told me I could not fix his Parkinson’s and now the facility can’t fix it either. He told me it is so hard for him, that he just wants it fixed.

We talked about the arguing here at home the past few months that he was here. We talked about his wanting to die so bad, and that I could not help him do this. I told him how much it bothered me when he spoke of death, and he said he could not help it, and I said that this was what caused a lot of stress and arguing at home, that I was weak inside, because I loved him, and it hurt so bad, knowing he wanted to die.

As I sat there chatting with him, my heart was breaking into pieces. Part of me was remembering the frustrations of what we had been through here at home, part of me was thinking how bad I was, because I could not hold on anymore. Part of Al wanted to come home, part of me wants him to come home, and part of him wanted to stay there.

It is a mess in my eyes. I see a man crying, a man sad and hurting, a man who misses his family and a man who wants to be loved by everyone. I see a man who remembers working and going to ballgames, and auctions and having a life, now being forced to be dependent on all others. I hate his dad, our dad, for causing so much emotional pain for him, not accepting that his own son was different.  I hate Parkinson’s for ripping my brother’s future apart. I hate that my own family won’t take the time to go see him. I hate everything and everyone right now, but it is because I am hurting emotionally. I was hurting from the strain among family yesterday. I went to my own bed last night crying from what used to be. I clung to my memories of my own children and how it used to be, and now fighting the changes, that have come about due to the lack of understanding on their part, and the yearning to want to be able to be myself.

I hurt for not being able to care for my brother as well as I used to. I hurt because he is hurting, and what is worse than anything, is I look around my empty house and I look at the Christmas tree that the lights are off, and my own life takes the form of the tree. Dark and dreary, unable to put the light back on, unable to make anyone happy, unable to spark a brightness in others lives.

Right now I am so thankful I am the age I am, that my life is at least half over. Heaven sounds great! No more aching heart, no more sadness, only light and joy. People tell me you can’t make others happy unless you are happy yourself. I don’t know about this, because the more I try to do what is right, the more life becomes gray.

Hopefully, tomorrow , the day will be brighter, the air will smell fresher, and maybe Al will realize somewhere deep in his heart, that I am not his dad, that I am his sister, and I love him with all of my heart. I want him safe, and happy and as pain-free as possible. Maybe some day people will respect me for being strong, and if they do not, maybe some day, I will also adjust to living alone, behind some curtain, dividing the world off from me, hiding behind the curtain, and wishing things were different.

All I know at this moment, is that I desire and need peace. No more screaming from anyone, no more arguing, no more pain, no more nothing. I pray for an inner peace to come over me and fill my heart. I pray for the heart ache to leave, and I  pray for the tears that fall too easily to once again disappear like they had for the past five years.

59 thoughts on “Maybe

  1. I know it hurts, but you are feeling, and grieving and that is actually good. You haven’t had time all these years to deal with your own heart and emotion. I know it’s intense. Have you ever considered seeing a therapist as someone you can just talk too even?

  2. I will specifically pray for that peace that you seek.

    I would think the best thing that the nurses at the home would do is to …instead of asking Al if he wants pain medication….to ask him if he has pain…and that way they will know that he needs it and just give it to him and Al will likely take it…. If they do it the other way around and he thinks he shouldn’t ask for meds because he doesn’t think the pain is bad enough to they can’t ‘force’ it upon him..which is the predicament they find themselves in now.

    In any case I know it is difficult getting a loved one settled in a nursing home and getting the people that care for them to understand the mentality of …in this case Al..in my case it was my mother…Take care Diane

    I

  3. Terry your words spoke to me because what you wrote is often how I feel inside. When the depression hits I just want peace. I am going away for Christmas because I just can not deal with another fake Christmas. I am tired of staying quiet just so I can fit in and not upset anyone but the cost of that has been that I feel I am betraying myself. Sriously, if my family can not accept who I am—what is the point of being around them or pretending. But hang in there my dear because you do inspire us, and you bring a bit of sunshine into our lives here on wordpress.

    ivonne

    • I know exactly what you are saying. Depression, peace maker, I can not pull it off anymore, I want a freedom, laughter, laughing at myself, love, and hopes. I know what you mean exactly, and if I could run a way with you my friend, I surely would

  4. You are, an absolutely incredible writer and during the time I’ve been away, I’ve come back to read how much you have developed, grown, and realized about yourself. Truly, you are meant for something greater than just this pain. And all I could think to myself while reading this was “wow, you should definitely publish” and share your story with many others who feel just as lost, lonely, and full of heartache over the incredibly tough positions, choices, and paths you have had to make. You might not realize it now, but you are stronger because of how weakened these struggles can make us feel at times. You are braver because of how fearful we become with anxieties looming our way. And you are more loving because of the anger you have felt in the frustrations you have endured. You are, without a doubt, my hero for getting through this torture for so very long, and I hope you keep hanging onto that hope, even if it’s just a sliver into the complete pie of yourself. :D Pumpkin pie! :D

    Pink.

    • Oh Pink, I think I love you…………..these words you have given me, describe someone so beautiful and full of passion, and yet as I look around, I don’t see the person that you are speaking of. If I can make one person keep moving forth, not going through with suicidal thoughts, or place a smile of hope somewhere in this world, I will have done more than I ever dreamed for. Thank you so much for every word. I will always treasure this comment and your faith and belief in me

  5. Terry, I don’t know what church you go to, but many Pastors, elders, or just others from the church, usually will take the time to stop in and visit with people in nursing homes, if they are aware or the family member asks. Perhaps this is something that you could discuss with your Pastor. Often there are local Pastors that do nursing home outreach’s and make a point to stop in and visit with anyone that would like to visit with them. Perhaps the nursing staff would know if there is a an outreach to Al’s home. Also some Pastors will do anointing and healing prayers for the patients. You may think that this would not help Al, but it could at the very least alieviate some of his pain. Ask you Pastor. I have chronic pain myself and often after an anointing, will go without pain for a period of time. God bless you my friend, you may feel alone at times but you never are and you bless us by letting us share your struggle in some small way. You have giving us the opportunity to pray both for you and Al, as well as for all your family!

    • I had not let the church yet know about Al being placed, but I am now going to call tomorrow. thank you for telling me this.I feel alone as I write my blogs at times, but with the comments, I realize I am not alone. bless you and thank you

  6. I’m glad you’re getting some good advice here, Terry. I feel for you so much. I am going through something similar (but not the same) with my son, and it’s very very difficult to stay strong all the time. I know this is a small issue, but for me it’s easier to take a huge problem and break down the parts: could Al get a different roommate? I’ll be praying for you both, Terry.
    Luanne

  7. Also, please do some research into palliative care (hospice care). It’s not about dying; it’s about pain management for your brother.

    • Hi Teresa, how are you? It has been many years……………..Al is on palliative care, but hospice will not get involved, as there is no termination date for PD. I wish for his sake there was, as Hospice is a very good thing at Al’s point in his life

  8. I think you are grieving …. grieving for the loss of the life that you had with a healthy brother or at least healthy enough so that you could be his caretaker. But that is not the way it is, and your mind is struggling with that. Hopefully Time will help you both adjust to the way things are, and find ways to feel pleasure, again.

  9. Does the facility have anything like an ‘adult daycare program’? Or maybe another facility or organization in your town has one? Al could spend some or most days there, with nursing supervision and the company of others, then return home at night. It would give you both a break for several hours a day, allow him to make friends with others, yet keep him living at home and alleviate the loneliness you’ve been feeling. You would also be able to monitor his care and meds yourself, instead of worrying whether he’s getting what he needs.

    • I have been caring for him for five years. During this time I have located no group for anything that he is suitable. I did the very best I can, and now he has been placed for two weeks. We are both going through an adjustment period, which in itself can be very difficult. I so wish your idea would work, but in this area, it just does not

  10. Terry, I replied to Pink above. I just want to let you know that I think it is going to take some time to grieve. Let yourself grieve. Think back to when you lost your parents. Didn’t you have good days and bad days? You are so strong, Terry. I know you can do this!!
    Hugs and prayers.

    • you are right Barb, this is what it feels like! This is what I am going through, but I never saw it until you pointed it out!!!! Bless you my friend, bless you for showing me it is ok

  11. I really know what you are going through – each time I visit Anthony is different. It can be wonderful one day and miserable the next and even though he has finally mostly adjusted to the nursing lodge, it has taken almost a year, so it could be up and down for Al for awhile yet but don’t give up hope. He will make friends and he will settle and so will you Terry because you are a rock.

      • It’s hard to know – I feel for you but don’t be tempted to bring Al home or you will have to go through the whole thing again – this was my dilemma a few months ago. It will be okay buddy!

      • I almost did today Julie. I felt so bad inside that he was lonely, I almost asked him to come home, but I did not, after I started to see the confusion and the tears, and the talk of death and dad, I just could not do it again, go through the pain

  12. So glad you decided to write all of this, Terry. No doubt at the very least, after typing and hitting ‘Publish’ you probably at least felt something positive from getting it out. I’m so sorry to hear that it was such a tough day and also the corresponding emotions and thoughts that came along with it. Life is really hard, isn’t it? :( As for being yourself – be that. No matter what. As someone who isn’t always himself, I pay the price in the end when I try to then be myself for real without any fear of anything happening. So definitely be yourself. As for peace, I will just offer you this: Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid. (John 14:27) God bless you, friend.

  13. Terry what a sad post. I agree with pink – you are an amazing compassionate person who simply must publish! This blog will definitely help other people who are faced with your and AL’s PD journey. My dad had Alzheimers, and I joined a support group http://www.Caregivers.com – One day I will blog about my dad’s descend into Alzheimers World. I must however confess that death seems like a great idea to me most days. No pain, no stress – just peace and quiet.

    • I think I belong to that site, but have not been on it for sometime, as no one ever spoke. Alzheimers is a sad disease, stripping a human of all that belonged to him or her for so many years. When you feel comfortable enough to share, I will want to read it. Hugs to you my friend. I know how you felt about the death, I often wish God would take Al home so he doesn’t have to hurt anymore

  14. Terry. I’m so sorry to hear of your brother’s illness and your unhappiness. I send you hugs and warm thoughts for brighter days ahead. Please believe that you have the strength inside to carry you through this and live a life of laughter instead of tears. Thanks for sharing.

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