No Escaping

DA-loops in PD

DA-loops in PD (Photo credit: Wikipedia)

I had taken two days off from seeing Al, and so today, I was going out there. I am having problems and I don’t know what my problem is. I have thought of all kinds of reasons it must be, but have not come up with the right answer yet. Maybe you see something I do not see.

I have taken care of my brother for about five years, and it was never easy, but the love I have for my brother, and the support from all of you have helped me to continue through the months.

Then it got to be more for me than I could handle, physically and emotionally. The falls, the lack of comprehension, the Parkinson’s Disease in itself, takes a toll on the whole body, mind and soul. As my friend Jo, over at Camsgranny says, it is ugly and rears its head when ever it can.

Now, he has been placed going on almost two weeks, and I feel like I am in mourning. I can’t get excited about Thanksgiving or Christmas. I forced myself after I saw Al today to go to the grocery store and buy the needed items for the Thanksgiving feast.

I mope without wanting to, I actually cry now, because he is not here. I feel like I have lost another member of my family, and actually, I have not. So why in the world do I get all stressed when I go to see him, since I miss him so much? I got in my car, and as it was warming up, I could feel my body starting to tense up, and my breathing getting shorter in breaths. I don’t get it.

I walked in to the facility and went straight to his room, but there was no one there, so I came back out into the hall and heard B1. Oh, now I know where he is! He is playing Bingo! I walked down there and instantly picked him out among the crowd. He was intensely trying to win, although he had already won three times!

I pulled his walker over to him and sat down on the seat and watched everyone play and I stayed quiet, not wanting to cause a commotion that may keep them from seeing a number and yelling out Bingo!

I did not wait very long, and Al looked at me with a smile, and said, What’s up, and I said just here to see and visit with you bud. He didn’t say anything else until Bingo was over and then he let me know all of his problems.

We sat there for a while talking as everyone else had disappeared from the social room. He told me he is seeing double, and that his vision is blurry. This is the second time he has complained about it. Part of me wondered if his vision was double, how could he play bingo, but if you know Al, he will suffer through anything to be around other people. I also wondered if it is his new bifocals strength in his glasses,was the culprit, but since this is the second time he has complained, I went to the office and stated my concerns. Now they are going to schedule another appointment with an eye doctor, to gain a second opinion. I will be glad when this is done, then I will know what is hiding behind those glasses.

He complained of ankle and leg pain, so I checked his ankles and they were filled with fluids. I could see my finger prints in his skin from where I had squeezed lightly. That stupid PD is going straight for his heart. I would just like to rid my brother of this disease. I want to be able to reverse everything this illness has taken a way from him.

He finally got up and started to walk, but I could see his knees buckling and his tremors were quite lively. He walked about twenty feet and said his feet were throbbing, so we sat for a bit, and then he got back up and walked to the therapy room. Evidently from what I have heard, he wanders in there periodically to see if they can help him remove some pain.

Today, the therapist sat him down and put this infrared heat on his knees. She said it penetrated way down deep inside. Each knee took fifteen minutes, so we all started talking about Thanksgiving, and I was telling Al when I would be there to pick him up that day, and then he started crying.

I am not speaking of big bad crying, I am talking soft gentle tears that could not be restrained. The therapist asked him what was wrong, and Al said he hated the holidays. He said that they were not the same as when Mom and Dad were here, and believe me, I knew what he was talking about, as I feel it every year about this time too.

He continued to cry and the therapist and I tried to change the topic, but Al’s mind gets stuck like a record on one song, and it is very hard to change the music. My heart was breaking, and the more he cried, my heart broke into several pieces.

At that moment, I hated life, I hated Parkinson’s Disease, I hated his heart being damaged,  his eyes being affected, and his ankles being swollen. To myself, I pleaded with Mom and Dad to come back just one more time. Do it for Al, do it for me, we miss you so bad.

Without knowing it the therapist brought me over a couple of kleenex and I said what, and she said wipe your face. I touched the kleenex to my cheeks and when I looked at it, it was soaked with tears.

Thank goodness it was noon, as it was time for Al to eat. I walked him down to the lunch room and made sure he was sitting properly on the seat, and then I told him I needed to go get groceries, and get home to let Polly out. He looked at me with his teary eyes, and asked him if I would come back tomorrow, and I said of course, you are my baby brother.

63 thoughts on “No Escaping

  1. Terry, i am glad he is there where he can focus on bingo and other activities for awhile and forget his pains. It comes back to him afterwards, but at least it was a diversion. I u nderstand your stress as you prepare for a visit. You know you are in for an emotional roller coaster. Holidays are hard for all of us who have lost family members and/or are about to lose them. At least you can be together. Somehow you will both get through. Prayers for you both.


  2. You probably are grieving this change and the stress you feel when you go to the nursing home might be what kind of suffering are you going to see this time. i’m sorry it’s so hard.
    You said the parkinsons is affecting his brain, could that be why he is having trouble with his sight?


  3. Terry…I believe you’re grieving this change in your life and Al’s. The transition was very quick and now it’s just hit you.

    I remember back when my mother lived with us and sometimes spent some time with other siblings…but at first it was mostly our home. She had been a vital person until the aneurysm and then brain surgery. The doctor prepared us that her personality would be changed and each year the scar tissue on her brain would cause decline. When this did happen it was gradual but then the time came when we as a family determined we could not meet her needs anymore and she needed to go to a nursing home.

    The day we three sisters took her and had to leave her there was traumatic for us…I can speak for myself only and say it was the most difficult thing in my life to do. This woman…my mother who had raised and taught me so much now had to be cared for by virtually ‘strangers’.

    Although we visited regularly, I can’t remember a visit without tears as I drove home.I tried not to show how deeply I felt ….in her presence because I thought it might upset her.

    So, knowing this take time to adjust emotionally…and realize that it is another phase of life ..not one that you like but it is what it is. Try to enjoy the good times that you can have with Al and be kind to yourself…..Diane


    • Diane, you have helped me so much to understand what I am going through. I feel like a wreck, my emotions are never stable from day to day. one moment i am crying, another moment i seem fine. I am not usually like this. thank u so much for helping me understand


    • Diane expressed it beautifully. My mother in law had Alzheimer’s and like you we knew she was with us, but she wasn’t. I know the circumstances are different but I can understand what you are going through. It is not easy but with friends and family who support you it can offer you much needed comfort and love. As always I send you hugs… Patty


  4. Grief occurs at all levels of letting go as we watch someone we love disappear before our eyes. I am sad for you because this holiday season will be difficult and you will have to create your own joy in the midst of the sorrows. Find comfort in your family and Polly and know that your cyberspace friends will be wishing the very best for you.


    • I am happy right now in one way, that I am not crazy, that I am not in some depression. I am grieving, and now I can accept it and go through it. Thank u so much my friend. You are wonderful


  5. Oh Terry, how my heart breaks for you. It must be so hard to leave Al there…. It is a dreadful disease and we say goodbye for a long time before they stop breathing. I wish we could all just go to sleep and not wake up. Why do good people have to go through such pain and anxiety. Hugs and fond regards to you.


    • yes Tersia, I wish Al could go to sleep and when he woke up his pain would be gone and he would be sitting with mom and dad again. I hate seeing him suffer, because when he suffers, so do i


  6. Terry, I have restrained from saying anything about you and Al because I don’t know what it must be like for you. I have never experienced the pain of Parkinsons altho my husbands mother did. I never knew her so I really can’t speak to it. However I understand the dementia as my grandmother who lived to be 94 but died from Alzheimers. This from a woman who in her much younger days spent 6 months in a tuberculosis hospital and had breast cancer. She beat them both but the dementia was incomprehensible for all of us. The emotional strain as I watched my mom and her sisters deal with her and eventually placed her in a nursing home was beyond words.

    My perspective on this is a learned process of letting go and by that letting go while people are here on earth. I have had to do this so many times that I should be better at it than I am but at least the process was in place. God revealed to me that placing him first was the only way to do it. And by that he means everything and everyone. Not realizing until a few years back I had not done that, I sat myself down and cried with God to let go of everything. This went on for a while as each day I had to reset myself to the process of giving people, life, health, whatever over to God. it is not easy, but I did it. The Bible says we are to hold nothing tightly, but loosely. As far as materialism goes that is not a problem for me. Family is different. God wants us to do this for the benefit of all involved. If you want to know more let me know.


  7. Terry, I’m glad that you take time out and it seems like Al is doing great at the home and it keeps him busy. Of course he becomes sad at time when you visit – because when he has pain he always turned to you for help and support. And when he has been of course emotions comes over him and in those moments he feels alone. Terry, he has people around him that he enjoys spending time with and there is staff that will provide him for his needs. You did the right thing – and you got your life back, even if it’s a bit empty – a massive part of your day was taken up with AL and that is now gone. He is in good hands.


  8. Terry, I am Marilyn’s sister. She came to visit you and Al and has kept me informed of how you all were doing so I finally logged on so I don’t have to ask her. We can always give the other person advice. I’ve not had what you have but I have had a long journey with my husband. I lost my first husband and the father of my 6 children when I was 45. That was the time that I realized there was no one on this earth that could help me. I asked God to go in the doctor’s office with us and make me strong. HE had coffee with me and stayed by my side the whole time financially and mentally. I still don’t know for sure how I did it. I had 2 children 8 and 10 and 4 older ones 20,21, 22 and 23. To comfort them, work and take care of my husband was my life. I had 2 sisters that I could call and sometimes just cry and they were always there for me. I have been married to my second husband for 20 years. He’s been through 2 replacements of the knees, open heart surgery, stents in his heart, lost his leg to diabetis side effects, had top lobe of hus lung removed and now has an incurable lung disease. With this I have learned a lot. You are grieving Al now. You have lost the Al that he was before he got so sick and little by little you will see him change even more. Putting him in the home was good for him because of the activities. Naturally he is going to tell you every ache and pain because you are the one that handled them for so long. Don’t be so hard on yourself. It is time to take a little time during the day for yourself. Do something that makes you feel better. Smile. Laugh. Relax. Take care if Terry now and let them take care of Al. Go to see him and take a book or game or treat. Something to help his mind think of something different. In a nut shell, I will pray that God gives you strength and wisdom. Sincerely, Carolyn Wilson


    • I think I have spoken to you once before, right? You seem very nice, and I can see the strength that you carry from your words. You are a wonderful woman, just like Marilyn is. I am honored to have you as a friend of mine. You have been through a lot, I can see this, and yet you stay strong. I think I am going through an adjustment period, but I thought I was stronger than I actually am, but am hoping day by day it gets better. I want Al to be happy and as calm as he can be going through this. Thank you so much for being here


  9. I would be of no help to you, dear Terry. I read this and just started crying too! Taking care of Al was such a big part of your life. It was what you did, as hard as it was, each day. Praying for Him to make a way for you, to open up new opportunities, to comfort you as you miss Al and your mom and dad. love and prayers!


  10. I can really identify with what you are going through even though it is now 9 months since my Anthony moved into the nursing lodge. I wish I had words of comfort but I am still trying to figure out my feelings too and visits are often very painful emotionally. Just please know how much I feel for you and for Al and you are doing so well Terry. Lots of love Juliexxx


    • I am relieved to know that is what is happening. I am not in the mood to fall into some bad depression. too much life to live yet, to give in. this sadness will pass, according to you, so i will deal with it on a daily basis


  11. hugs and wishes babes. Stress comes from not knowing how you will find him, it is natural. I was like this when I used to go home and visit mum never knowing what I would find….. hugs and here for you x


  12. Hi Terry. This sounds like empty nest syndrome with a whole heap of stress thrown on top, never knowing how Al will be when you visit. You are his support system so I suspect he will always rely on you to tell his problems to. I wish I could give an amazing insight but unfortunately I have no experience with what you are going through (or fortunately for me). All I can say is I think what you are suffering is perfectly natural, but take heart that it certainly appears that you made the right decision for Al’s welfare.


    • you are probably right Elaine. I had a few good moments in my day today, and for this I was very grateful. I still go through many sad minutes, but hopefully they will subside in time. thank you so much for your words, they bring me comfort


  13. By the way, I’ve not been reliable about checking my updates (starting a new job next week, been very busy, sorry). Did Al’s card ever make it to you? I posted another at the same time that arrived some weeks ago, so if it isn’t there yet I suspect it’s lost.


    • yes it did, and I made a blog where I thanked you and some others. I am sorry that you did not receive notification of it, but it was received and did produce smiles!!!!!! thank you Elaine since you did not see it. you are a true blessing


    I wish you the best Thanksgiving …enjoy your time with family and Al…each day is precious…Love, mkg


  15. Terry, I have read through some of what the bloggers have shared with you and everyone has shared with you wonderful advise. It is great that you visit with Al regularly, he still needs you to hear him…but remember, he is being cared for and it sounds wonderful. I am going to share with you what my grandmother did when we brought her home for Thanksgiving just a month of being placed in the nursing home. She talked with us all when she first walked into the house and kept asking when we were going to eat…after the meal, she said, “I’m done, now will you take me back?” It took my dad and his family by surprise. She came just to eat…she did not really remember us…it really was not out grandmother that we knew growing up, but we still loved her and I believe she knew that. She thanked my dad once we got back to the nursing home, for taking her out for dinner. She went in and started playing bingo with her new friends…I am not sure she knew they were not family or not, but they treated her well. Our love for our family is so strong…Al is still there and always will be as your parents are with you always (In Your Heart). Maybe to help you during the day, you could maybe volunteer at the hospital or at the library reading to the children or older adults that can’t see the words to read. You are still needed, but in a different way now. Al loves you and he knows you love him too!
    Sending you prayers and hugs my friend. xo


    • Yes, I can tell in some ways he does not need me, and in others he does need me. He saves his pain and sorrows for me, and looks to the residents for fun and socializing.It hurts a little that I tried so hard and for so long to make him see me differently than his dad, but his head has a block in it and he could never see it. Now he laughs and smiles more for strangers than he ever did for me, but I am trying so hard to work through it. That is so sad what happened with your Thanksgiving, but it is easy to see that she was not quite well, and to know and understand that she would never treat anyone with less than a cheerful conversation if things had been different. Some do not visit Al, as they want to remember him the way he was, and I understand this


  16. Terry,
    What you have done was necessary for his health and safety. The fact that you feel the way you do is normal. He depended on you for everything, and you gave and gave. You are a good sister… many wouldn’t have taken it upon themselves. They would have taken the easy way out.

    Now the house is quiet, empty and lonely. It is understandable that you would experience grief and loss. You need time to adjust to having more freedom. And there is the key! After years of service and love to your brother you need time to adjust to the void he leaves. I sense some guilt on your part, but you gave all you could. Should you have kept him there until you or he, through some adversity, became physically hurt?
    Enjoy your time with him at the care facility, and equally important, enjoy you new freedoms. Allow yourself to get out into the world and see what you have been missing.
    It is OK to have some fun and enjoy this change in circumstance. You made the right decision.


  17. Oh, Terry, you are in mourning. For the brother Al used to be and the life you had before and during the caregiving. You had so much to do with Al and now you have all this time on your hands. You need time to acclimate yourself to your new situation. Just know that it IS okay to do things that are fun and give you pleasure. And, always remember that we are here for you!!


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