Today, I got a few hours of respite with one of Al’s favorite caregivers being here. I wanted to visit my son whom I have not seen for months. Al had woke up not in a good mood and was full of pain.
He ate his breakfast and took all of his medications, plus his pain pills. He did not stay out here in the living room like he normally does, but went back to his room to be alone. He has a new thing he has been doing for about a week. He takes his glasses off a lot of the time. So there he sat in his recliner with his glasses off and his bible on his lap opened. Although it is big print, I know that he could not read it with no glasses on. I left him be and continued to get ready to leave.
The caregiver arrived, and I left. I had a nice visit with my son and his g/f, and my granddaughter, then I left and came home. I was gone about four hours. When I walked into the front door, the caregiver did not look her normal cheery self, and of course I asked what was wrong.
She filled me in on the morning by saying Al was mean and begging to die. Now if anyone in the world can make Al smile it is this caregiver, but it did not happen today. While she was here one of the newer therapists came today, and Al refused to do the exercises, saying he was in too much pain. I guess she tried but with no success.
Al told the therapist and the caregiver that he wanted to die. He wanted to find pills to end his life NOW! He explained to them that he wanted to be like a monitor that shows the flat line and have the same noise because this would mean he was dead.
He refused his noon meal and also told me when I got here that he was not going to eat supper, because he knew that if he did not eat, he would die. I was flabbergasted at this information they were feeding me, and for him to be this way in front of his favorite caregiver told me he just isn’t here with me.
Al talks about dying all the time, but I have never heard him making plans on how to do it. Al is only mildly mentally handicapped, and there are areas still in his brain that are very intelligent, but he can’t make good choices and doesn’t know why he acts the way he does.
I was very concerned at this point for Al’s life, and I was having selfish thoughts too. My thoughts were screaming to Al. I have taken care of you all these years, and I will be damned if you are going to die here in our home from something you have done to yourself. This is what I was thinking and screaming inside.
I went to the phone and called the favorite therapist and she of course could not fix it, but she suggested I take Al to the mental health hospital, because of being suicidal. I thought that was a good idea, so without telling Al where we were going, I just told him to get his shoes on and his jacket, that we were leaving.
He knew where we were when we got there and he told me that I wanted to commit him for life, which is not at all true, but I was not going to argue for the millionth time right there in the parking lot.
We got inside and I announced who I was and why we were there. In minutes some guy came out and got name and birth date and went and pulled records from the past. He came back and told me that he was going to take Al back and talk to him alone and then come get me, and I said no you are not! He says yes I am, and I said I will turn you in if you refuse me to be there also. I am his guardian and conservator. He is mildly challenged, and I want to be there to listen and help fill in the blanks. Finally, he saw that he was not going to win, and we all went back.
He tried talking to Al and as soon as Al said he wanted to die, the gentleman went straight from Al to me for the complete story. After filling in all the blanks on the pages, the man had tears in his eyes as he felt the pain and anguish Al was going through. He told me he was going to go call the house doctor and see what he had to say about admitting Al for suicide watch.
In about three minutes he came back and said in all the years I have worked here, the doctor has never come in from a call, but he wants to talk to you in person, so he will be here in about 15 minutes.
Exact timing later, the doctor came in and looked at Al and listened to his talk of death and how bad he wanted to die, and he said to me, this brother of yours is in so much pain from the Parkinson’s Disease, he feels he has no reason to live, and this is why he wants to die.
We can not help him here, because this is not a crazy man type of thing. This is a man who is suffering from an illness and needs a higher level of medications. He suggested we go back to the family doctor and demand better medications, and for me to make sure to tell the family doctor that I have had experience with lifeless people.
He continued to say that this was inhumane treatment, and Al deserved to be pain-free while being in this fifth and final stage. If the doctor refused even with my court stamped papers stating my wants for Al, I could go to a pain management, and maybe get help there, or as a last resort place Al in a nursing home where he would get the proper medications, which would make Al quit talking about drying and plotting on how to make it happen.
So tomorrow I am going to call the family doctor and try to win this. Call me selfish, but if Al is going to die, I would rather have him die here at home surrounded by his coca cola, his vintage cars and me, not a cold nursing home bed.
The nursing home idea is not out of my head, but it is a last resort. The doctor said he thought I could take care of him if I had help, and I was given a company that would come here, which I liked. I would have help with Al and also get respite for me. The doctor said one final thing before he came over and gave me a hug. He said you love your brother, I can see this so clearly, and I wish there were more family members out there like you, but the thing now is to get Al out of palliative care and into comfort care. Let him live the rest of his days in a peace he has not felt for a long time. With this he left the room, and the gentleman that had been helping us from the beginning, gave me a hug and tears were still flowing from his eyes.
Wow! I really feel for you and your brother. I am happy they talked to you and gave you a name of a company that could help. Do you guys have like hospice available to you at all? I am in Michigan and know we do but was not sure if you do. I ask because it has been mentioned he is in final stages. I pray for you both on a daily basis and hope that you both find the peace you both deserve sweety. Take care.
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hospice will not help because they say we have no six month or less time frame, to call us when we know he is dying
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Here’s hoping you both finally get what you need most.
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thank you
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Here’s hoping Terry that you can get the medications for Al that will help him with his mood swings and talk about dying. There has to be an answer for him….Diane
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there has to be, and I am going to find it!
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This is a sad, stressful, but beautifully loving report.
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Mona, I just want someone to help his pain. Am I really being that unrealistic, that they turn a deaf ear?
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I’m so glad you got some caring doctors who were really able to listen and hear what’s going on. I hope that you’re able to find an answer!
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i am hoping so also Andrea. first thing in the morning I am giving the family doctor a ring!!
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Good luck!
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Terry,
From everything I am reading about what the doctors are saying and your experiences with Al, I think that he should be able to have hospice services. Al should not suffer in pain and you should not go without the support you need. If one hospice will not admit him to care, you should call another who understands that the goals of care are comfort and dignity and that is illness is progressing. When you talk with his physician tomorrow, please inquire if the doctor thinks that he is eligible for hospice care. If not, the home care team should be able to work with Al and his physician on better pain management. No one should need to live with uncontrolled pain. If there is something I can do to help you get connected to programs in your area, please let me know.
Terre
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the only hospice that i know of in this area has refused, do you know of any others here?
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Terry,
If you can tell me where you live (town and state) I will look into options for you (you can email me directly through CwC if you prefer). I am currently traveling but will be returning on Friday morning and will get back to you with any information that I can find. Most areas are serviced by at least a few hospice programs and I do have access to this information. Al should not have to ensure the physical and emotional pain that he is experiencing and you will benefit from the help and support.
Terre
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warsaw, indiana
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Praying for you as you talk to his doctor tomorrow. I wish that doctor could’ve been in the room with you and Al and the other doctor and care person. . .so he could understand better what is needed. And Terry, I’m crying but also cheering, as your love and care for your brother was confirmed by these people. You need to hear that too. God bless you as you keep on fighting for a dignity of life yet for Al!
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Debbie, pray hard, because I feel defeated, and of no help any longer. This is the roughest day I have had to deal with so far
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Still with you. xoM
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good, because i am hanging on for dear life
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Yes, I can see that…xoM
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Oh Terry – here is hoping the doctor will improve the medications immediately. Has this happened yet?
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it is evening, and the doctor’s offices were closed by the time we left the hospital. have to wait until morning
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I just realized that – I hope your night goes well – the title of your post gave me a bit of a fright. Are you okay? Stupid question I know.
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I am probably as ok as you are Julie. I feel numb anymore, too much pain to deal with and my body knows no outlet. i imagine u go through this also. i am breathing but sometimes care about nothing, do u ever feel this way too?
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every word you speak to me is never thought of as stupid. i only see them with love and respect for you my friend………………………i am so thankful you are a part of my life
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it is so fabulous that you took him in and got a compassionate doctor. i am going to hope and pray that you get the help you need and that al can get the relief he needs.
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i still believe in prayer, i am just waiting for an answer. thank you Sandy
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I pray that you will be able to get through to Al’s doctor and that he won’t just put you off again. Maybe if he knows another doctor has given his opinion it will make him think twice before he thinks of refusing you.
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he has put me off because he says that Al will fall even easier. i understand this, but i would rather see Al lying and resting and pain free, or a lot less pain
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I can understand. One of my friend’s son-in-law has had a serious internal problem for a long time now and has lost so much weight – down to less than 80 pounds. No one has done much for him though he went to 2 specialists. He has found a new doctor now who is just setting up practice. He has sent him for many tests he has never had and for blood work as well and has already found some definite problems. He got an appointment with another specialist through this doctor for the first part of November. This Dr. has done more for him than all the rest put together. So I pray this new doctor at the pain management clinic will do the same for Al.
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that is so awesome that your friends son-in-law is getting the much needed help he is. I have had conflicts from others saying if i take him to a pain clinic they will drug him up. when i think of drugged up or full of pain and safe and not thinking of death, i choose the drugged up
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Drugged up for someone who is not near the palliative care stage is not good, but when you get to the stage Al is in, there aren’t the same options and his comfort is more important. And if the pain is less his emotional state may be more peaceful as well.
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these are my thoughts exactly, I wish everyone understood what you do. thank you Diane
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May he find the peace and relief he needs in the manner that God deems fitting, and may you find the serenity and strength to keep standing in the face of your worries, pain for your brother and the helplessness you may feel at times because you can’t take away his pain and frustration. <3<3<3
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thank you my friend. i want a miracle to happen very soon……….hugs
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Terry, My heart really goes out to you right now. It brought me back to the last few months of my mom’s life, and how I wanted to hold on to her and it was hard to go through. You have my prayers and Al too.
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it is a tug and war thing Bonita. part of me wants to let him go, so he can have peace with God, and the other part is stingy and wants him to stay here with me. thank you for the prayers so much
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Terry, this brought tears to my eyes. It makes me so sad, but I’m so grateful kind and compassionate people were there for you and for Al. And the doctor is right. He should be pain-free, however and to what extent that is possible. You poor souls. to you and to Al too.
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I have called the doctor today and made my request for new medications, now i am waiting for a phone call which could be tomorrow as the doctor is out today, go figure, . a new day today and new hope
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Terry, even I cannot read this without tears coming to my eyes. I can feel Al’s pain and I can feel your pain as well. You are such a dedicated and loving sister. What a blessing for Al to have you as an advocate for him.
hugs out to you and Al.
ivonne
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knowing that you can feel what I feel is a comfort to me, that I do not feel so alone. thank you so much Ivonne…………….
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Oh Terry, you are not being selfish to want Al to be at home with someone who loves him. I pray that you will both get the help you need.
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thank you for understanding Tilly. this is why i love some sites that are full of laughter. you see how much i need to read your blogs. they bring me joy and a diversion for a period of time and they can bring me laughter also
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I really am glad to help in any small way I can.
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My heart feels for your plight Terry and my head tells me you are doing everything right. Keep battling to get that care and the medication you both need to ride this out. You must be absolutely shattered emotionally and physically with all of this. Prayers as always for you 🙂
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i immediately upon awaking this morning, and did call the family doctor, expressing my concerns about new medications and saying that I was firm in my decision, and guess what? the doctor is not in today, but she will relay the message and now we wait and hope
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That’s so typical! Best wishes for you as you wait 🙂
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Will be praying for you as you hear back form the doctor. I am so glad you took Al in to the mental health center. I am really hoping that things get settled for Al (and your sake as well) very soon. I know this is a “patience” thing right now but you certainly seem to be on the right track and trusting the Lord as you go through this.
Thank you for your continuing testimony and willingness to share your circumstances with others who are greatly helped by it.
Isa 41:13 (KJV)
13) For I the LORD thy God will hold thy right hand, saying unto thee, Fear not; I will help thee.
May the Lord bless and keep you through this time of uncertainty.
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thank you so much Rob
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I am glad you finally got a hug. You deserve one.
I’m glad too that the doctor commented on how much you love your brother. People out there can see the care you put in and do recognise it, thankfully. Be proud, you should be.
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thank u my sweet friend………….you are always so kind
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It seems this Dr.you talked to at the mental had more sense and talked the truth better than anyone so far…I feel they saw the whole picture and gave you wise advice…I like that you want Al to be with you still…
You are just a wonder…and I truly hope his Dr. will see that Al is in need of a pain medicine regiment that will give him some peace and in turn you too…
Those last days…and we know not how many there are… are so hard to bear… but, I know you are strong and will get through this…love, mkg
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he has an appointment with pain management but not until 11-28
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that’s another problem with our healthcare system…He needs it NOW…and they can’t see him for over a month…I would like to put them in his shoes for awhile…
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not too much upsets me from 0-100, but this did. Al is not kidding around and to have to wait for a little over a month burns me up
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Prayers for you and your brother!
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thank you so much Elenabj! I always accept others prayers……
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There are support groups online that can help you and your brother. Daily Strength is one I recommend. My thoughts and prayers are with you.
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thank you for the suggestion. i will definitely check Daily Strength out!!!!!thank you for the prayers. prayers work!
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I know I am late in reading this, so maybe you have adedressed this in a later post, but did you try the things the doctor suggested and did they work out at all?
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He is now on a brand new medication and I have not heard him saying he wants to kill himself. This is a good thing for the both of us
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I am a caregiver, and have been since 1994. So I can relate to this story quite a bit! God bless you and thank you for following me! Love your website too! ♥♥♥
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HI Lyn, so nice to meet you and thanks for stopping by and chatting a moment. i have been a professional caregiver for many years also. i first took care of my father as a family caregiver, while he suffered from bone cancer, and the week after we buried dad, my brother had a heart attack, and so it goes on an on with heart problems, and Parkinson’s Disease. He is very sad and wanting this illness to leave or let him die…………..it is a sad house sometimes
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Oh I undrstand. I woked for a local hospice company for about four years and it was very sad. It is nice to know another caregiver! You’ll have to email me sometime and tell me what area you are in! I don’t publicly say, only a few select people because of my books. I use a pen name to protect my family and my identity. I do have a book in the industry of caregiving, under a different name, you would like! God bless you!
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