Faith, Hope and Friendship

It is Thursday evening,7:30, and all is quiet. I feel like I am waiting for a package to arrive and maybe I am.

I have had some information for a week now but was waiting until I could tell you about it until I knew I wouldn’t break down half-way through the post.

I will say first off that anyone who prayed for Al and me and the situation about Hospice being involved did a great powerful job of praying. The prayer was answered. Hospice is going to be involved all the way.

The hours have been split between Hospice and the Day Care program. Al will have his bathing and dressing done between all of them. He will have 24 hour nurses at his door. He will be checked on regularly.

He even gets to remain active out in the community. I thought this program would end once he came home, but God wants him to be as happy as possible, so it remains.

I had the meeting with the State, the Day Program and the facility this morning. It went well until the administrator spoke his mind. He was considering not letting Al be dismissed because of the pressing debt we owe this place.

I was torn in pieces. My brother wants to come home so bad and yet he still owes over $3,000.00. To have to tell Al that he could not go home was enough for me to want to run and run and run. Just hide, never to have to see Al’s sad face and tears galore. I couldn’t deal with it.

Instead I spoke up and told him what I thought and what the Ombudsman thought and I told him that I would be following the directions of the Ombudsman, and that he would release Al tomorrow as planned or I would call the State back right here in the office in front of all.

He smiled that wicked smile, and then said I better make sure that bill is paid. I have 11 days left if anyone at all would like to make a small contribution. Any amount is helpful. The address is

I won’t ask again as the time for this fundraiser is almost expired. I want to thank all of you who have already helped and I want to apologize for asking one more time for help.

At this time, the hospital bed, wheelchair and lift chair have all been delivered. I have his bed made and the door is remaining open to open the room up some.

Excuse me while I choke a little. I told myself I am not going to cry. It is just I get tired. Tired of fighting everyone to get what Al deserves. Tired of the family that is left that never comes to visit. Tired of fighting the system, tired of the nursing facility, tired of seeing bottles and bottles of medicines and tired of sad news.

The news that I learned last Friday was not good. Al has another diagnosis on top of his Parkinson’s Disease. It is called M.S.A. It mimics Parkinson’s very much, but there are changes that happen that can place it in detailed form.

So many things have fallen into place this week. Why Al sweats so bad, why his illness has progressed so quickly. Why he cries more often than not. M.S.A. attacks the spinal cord plus the central nervous system and messes with the electrical system. His heart doesn’t know how to beat properly. He can have heart beats up to 300 per minute. The sweating is involved. Depression is very high. M.S.A. stands for Multiple System Atrophy.

I didn’t realize that the doctor had faxed this new information to the facility this week. I couldn’t figure out why so many were coming up to me and patting me on the back offering, I am sorry’s.

Then someone told me they knew. They knew what I had been running and hiding from. They knew that Al’s life had changed. Now I know for sure why Hospice is involved. Now I understand why Al is coming home on this precise date.  M.S.A. has a much shorter life span, and the news that I had to listen to from the doctor was, Al will probably not be here in six months. I want him to have everything he needs to be comfortable. He will end up aspirating from this. Food will go down into his lungs and this will take his life. I want you to have nurses around the clock for you to utilize.

These words still haunt me a week later. Life is going to be the best I can make it. For Al and for me. I am going to make a new memory out of every single day he has left. God knew all along what was going to happen. His plan was perfect.

So from here on out, it will be all of you, Hospice, Day Program and me, and I will get through this, because God knows I can do it.

Each day I will carry hope, faith and friendship until the very end.


45 thoughts on “Faith, Hope and Friendship

  1. Terry, I am so proud of you, for numerous reasons, but you have come such a long way from our call last week. Remember what I told you about th N.H. I am only a phone call away, and I will be there for you no matter what. Make memories, giggle lots, and don’t let the days be filled with sorrow, live each day to the fullest, and just enjoy your time with Al.


  2. I say ‘Amen’ to the comment from camsgranny. I’m sorry I haven’t been here very often lately. I haven’t forgotten you, though, nor have I stopped praying. I have been extremely busy especially this last week–in a good way. I’ll explain later. I pray that these last months with Al will be memorable in the best possible way. Take lots of pictures. Spoil him as much as you are able. And the Lord will reward you richly. And I pray that Al will be as comfortable and peaceful as it is possible for him to be in his condition. And when his time does come, even in your grieving remember to rejoice that he will be in a glorious place, pain free and together with Jesus. And I know the Lord will carry you through even that time. God bless you and keep you and strengthen you greatly for the task ahead. Praise the Lord that you are getting maximum help through this. God is faithful.


    • God has made himself known in so many ways and shows me daily that he is with me. I know without a doubt, I could not do this final chapter with out him. thanks Diane, so much


  3. Terry I am sending you a big hug right now. Thanking God for His perfect albeit sometimes confusing to us, plan. So glad to hear Al will be able to LIVE his life and will be cared for properly. As a friend of mine always says – cherish every moment. I know you will. God bless you both.


  4. God bless you Terry. I pray the Lord blesses your time with Al, and I rejoice with you that He has set everything into place for you. Be encouraged as you go through these days that there will be wonderful and beautiful times together that you will treasure forever, and there will be difficult and painful days that may seem to crush you, but remember, You ARE NOT alone. cry out to the Lord, and cling to HIM tightly, for He will never abandon you, and He will give you the faith and the courage to endure.

    I pray for both you and Al that his remaining days may be joyful, and that the Lord will nourish both of you with His strength and wisdom, but most importantly with His love. I pray that in the midst of the pain and difficulty, He will give you His perfect peace that passes all understanding. Please know that there are many other men and women of God that God has inspired to pray for you, and it is also my prayer that our prayers for you will hold you up, strengthening you when you are weary. I pray many, many blessings over you and Al in Jesus’ name, amen.

    By the way, the administrator cannot hold Al hostage until his bill is paid. That is just bologna! Al is a human being, and to hold him captive in that nursing home is like enslaving him, and as we both know, slavery is illegal. I’m so glad the Lord gave you the strength to stand up to that bully.

    Love you Terry,


    • He embarrassed me so bad by standing out and saying that in front of so many. Many who do not know the entire story as I don’t broadcast news of this type. Forcing me to explain to the waiver people after the meeting instead of being able to go down and spend time with Al. There was understanding to the ones I did talk to about it. I had no idea that they could hold Al there until the debt was paid. The waiver people said do what the Ombudsman said and some day the bill will be wiped a way.
      All of you are so kind to me. You don’t know me from Adam and yet your friendship holds fast. I count on the rocks here at WP. I love your post that I receive daily. Life is so full right now that I don’t get to always respond back but I do read. You are very special to me Cheryl, always know this


  5. From the moment I first read of you and Al…I have sensed your great stamina…and love for your brother…You have done all that you could have done…and now…just be together and …So, SO glad that the things you and Al need at this point are in place…Bless you!…I sit here with tears thinking of Al…he was such a sweet guy when we met him…I’ll never forget!


    • oh Marilyn, my eyes water as I read your comment. Al has always held a special place in his heart for you too. If you come up this way at all this summer, please don’t leave without stopping by the house. big hugs


  6. Blessings and peace to you, Terry, as you walk down this difficult road. Cherish the time you have with Al, and take pictures — the last picture we got of my brother before he died was not a good one at all, and my mom really regretted not taking more pictures of him during his lifetime. On a side note, does the Ombudsman think they can hold Al until the bill is paid? That doesn’t seem legal to me. Is the administrator saying that he is going to keep Al for 11 more days until the bill is paid? If not, what is he planning to do if the bill isn’t paid and Al is at your house? Sorry for all the questions — I’m just old and easily confused.
    You are feeling down right now, so I know now is not a good time to talk shop — it’s a difficult situation for you, and I will keep you and Al in my prayers. So glad the arrangements are falling into place, and I know Al will be much happier and comfortable at home with you.


    • Al came home, but the debt is his until he is no longer living. They will just keep after me, but the Ombudsman said to pay something each month, so this is what I am doing. I didn’t call the Ombudsman when they threatened to keep him because they backed down when I stood up to him


      • That “debt” was incurred due to the financial negligence of the facility — they should be elated they’re getting a monthly payment from you, because you don’t owe it. Try to enjoy this precious time with Al — there will be plenty of time to worry about all this other stuff later. More hugs to you!


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