A Very Long Day


11pm at night. Quietness at least for now. I feel so guilty that I have not been on here much the past couple of days, but Al has been so restless.

I have just changed him and rolled him over on his side. I pray that I won’t be up for a third night in a row. I am going to place an ad in the newspaper tomorrow morning. I just can’t do this anymore.

My neck is burning, I am sure it is muscles. I had some sort of spell today. I felt hot all over. I was actually sitting here at the computer and suddenly got hot and felt like I was going to pass out.

I knew I needed to get to the bathroom and splash my face with cold water. On the way there I leaned into the wall a little. I got light-headed. I had been to two doctors this week and my blood pressure was a little high. When I took it here at home it was the same as it was at the doctor.

I just can’t do this alone anymore. As long as he is confused and needs to be rolled so often in bed I need help. Please pray that someone responsible will answer my ad.

So far Al is saying he does not want to go to Day Program tomorrow. It is serious when he said this. I never in my life I thought I would hear those words.

The shower girl will be here tomorrow morning. According to how he is, he will either have a shower or a bed bath, and then I guess we shall know then whether he is going.

If Al is going to remain home I definitely have to have help. I need to get to the grocery store. No one delivers to homes in our area.

I have been working triple time to slow down my mind. I have stayed either with Al today or on the couch lying down. Al never slept all day but then at nine tonight he took a little nap.

I got a call from the Hospice Doctor this evening. I was surprised to receive this on a weekend. He was checking on Al and he definitely told me that the medicines he took Al off of will not shorten his life span, but neither are they doing him any good any longer.

He told me Al should not go to Day Program and I agree, but I am still leaving it up to Al and how he is feeling, but it seems Al is figuring it out all on his own. The doctor told me that each day Al will now become weaker and each time he is made to move around he will suffer more and more.

He stated a weird thing when I really think about it. He said, ” Each day Al is one day closer to dying.” I already knew this. I think doctors and nurses beat around the bush. They have ethics and politeness when sometimes I would rather hear the bold truth, but then again, why. It doesn’t matter. I try to make each day count.

When I roll him it is a huge struggle and I get stressed because I feel like I can’t do it. I know Al knows it is hard because he kept telling me he was sorry. Of course I would feel guilt that I verbalized my groans of pushing and moving and I would tell him it isn’t his fault, that I know if he could help he would for sure.

His tremors just this weekend have curled his toes up bad. He has a large looking hammer toe now from the curling. His arms won’t stay to the side of his body. They repeatedly make their way back to his stomach area.

No matter when I went in to check on him his hands were holding each other and he was beating himself in the stomach from the tremors. I have to wonder if I can get his shoes on him.

With all of the doses of pain medications  no one can seem to get the tremors to stop. I believe in my heart that the only one who can stop those tremors is God.

I don’t know the time but I am thankful that I have put up our Christmas Tree. I told Al I was going to put up white lights for him in his bedroom today but I never made it to that. Hopefully tomorrow.

I let the house go today. I fixed a meal. I cooked chicken legs and de-boned them. I cooked noodles in the broth and made instant mashed potatoes. I also made a pudding for Al. I took the seasonal pumpkin pie spice Jello pudding mix and added beaten cream cheese and a container of cool-whip, then enough milk to make it the consistency he needed.

He ate one doughnut yesterday. Today he ate about five bites of pudding two different times. He also ate about a fourth of cup of noodles. He didn’t eat much but he ate more than yesterday. I could hear his tummy growling but he is barely eating.

Well the day is over, hopefully. I am headed to bed to get some much-needed sleep. Keep us in your prayers for a helper to arrive. Hugs to all of you for your love, friendship and support. I couldn’t do it without the emails, phone calls, and comments.beautiful-christmas-scene-christmas-wallpaper.jpg

54 thoughts on “A Very Long Day

  1. I am praying for you and Al. Praise God for small advances. By His will, tomorrow will be better. Someone will answer the ad and you will mend, also. By the way, that is a lovely picture at the end of your post.
    Peace & Blessings unto you and yours!

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  2. It takes quite the spiritual soldier to humbly handle these things and you are an inspiration to me. It’s in the moments we are running on fumes, barely able to keep up, and wondering how much more we will have to carry before collapsing that God hows us how strong we are. We realize if we were relying on ourselves we would’ve been on the ground a long time ago. You are a woman of God and its because of your ability and humility He trusts you with challenges such as these.
    This is the place you can recover, re assess, and find friendship which hopefully gives you the heart to get back in the game and do it another day!
    I just want you to know The Lord put it on my heart to let you know what you share is needed! You pray for a helper and He will be faithful, but just know you are helping as well!
    God bless you and strengthen you. Keep up the good work and writing!

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    • Oh Bright Star what a wonderful comment you have left me. I pray that I get help with Al. You are so right. I sometimes wonder how I continue on, but then I remember God is giving me my strength. Thank you so much my friend, big hugs

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  3. Terry, you know that I love you…can they give Al a sleeping pill so that you can get some sleep, and can they also give him an anti anxiety drug, these are both suggestions that come to you from a good place, not a bad place…they come from compassion in my heart. As a patient begins to really understand their situation, a lot of fear and anxiety may come to the surface, in a very big way. The anti anxiety drug will not harm Al, and may help him at this stage. And, you both need to sleep. My thoughts are with you tonight Terry, you know that…I think the doctor told you the absolute truth, that Al is getting weaker and weaker, and that moving him at all is physically a huge cost to him…please listen to the doctor, Al absolutely should not go to day care anymore…talk with the doctor directly, especially at this point, and tell him point blank that you need help with Al physically, he will know what you need, but you have to be blunt with him. Also, Al’s tummy at this point may be inflamed and painful, in which case, which I don’t think is unusual, his body will not want him to eat. Its not that Al doesn’t want to eat, but his body is refusing the food being put in there, this is also common in a variety of diseases. Dear Lord, Terry, my heart goes out to you, I am so worried about you…

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    • Hi my friend Carol. Al is on a few calming medications. The doctor keeps increasing them because Al seems to get immune to them quickly. I can’t imagine what he would be like if he didn’t take these. Today was the best day in four days. He is still very weak. I put him in his recliner but he only lasted about ten minutes and he wanted back in bed, but he did eat the best today. It does seem the closer he gets to his end, the more anxious he gets. The Day Program is being left up to Al. Since he is the one telling me he doesn’t want to go, it is fine with me. Now tomorrow he plans on going. I don’t know until then if he actually does or not but he has a brand new wheelchair that does all sorts of tricks. He can even nap in it. He goes for four hours and usually it is good for him to socialize. It will be interesting if he does go how he feels and feels about it when he gets home

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  4. I too will pray for you. I have walked this path with my husband – and know exactly how you feel thinking I just couldn’t keep doing this day after day after day but God sustained me and I finally lost him, and then going through a cocktail of emotions after he was gone. Feeling gratitude for the relief of the burden and that he no longer suffered, but then feeling guilty because I was grateful his struggle was over –missing him and feeling lonely and void of something to do. I had taken care of him for 13 yars and didn’t know what to do with my self after he was gone. Feeling very sad and very relieved at the same time. I will continue to pray for you my friend. God Bless and strengthen you.
    Bernice

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    • Good evening Bernice. I think about this too. What will I do if Al goes before me……….I have been a caregiver for 23 years. For seven years I have taken care of family. I took care of our father when he had Leukemia and when he died, Al had a heart attack a week later. A year later he had a big seizure and only months after that he got M.S.A. I suppose in the end, once I can function like a human being I will be a care giver once again. I only hope that it is not a family member. Family is so much more emotional. I will feel like you did or do. Glad that Al is no longer in pain, guilty for thinking that because I will miss him so bad, and void will be highlighted for some time. God bless and hugs to you my friend

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  5. Dear Lord, please put your arm around Terry and Al, pour I to Terry strength for today, and the other days that lie ahead, give Al rest in his spirit and light on his road home. We say dear Lord, that if you cannot come yourself you always send, Terry’s friends are asking you to do just that, send all the help both need and give them and us cause to wonder again at all your loving kindness as you answer our prayers in Jesus Name, let it be so. Amen!

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    • not from the nurses I can’t. They don’t do anything but nursing, sad to say. They will pay help but it is my responsibility to find the help so I hope the ad works

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  6. When humans take care of each other sincerely neglecting their own welfare; they are better than angels. May the Creator award you with the best of awards Terry for your strive.

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  7. I wish I could take turns with Al too…I wouldn’t mind at all…but, distance …Hospice can’t help you more with some kind of help??? I thought that’s what they did…but, they probably just want to take him to hospital…I’m just trying to think…

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    • Hospice nurses just do nursing. They say they don’t have enough employees to send one for Al, that everyone is working already, but if I can find someone they will train and pay them, so hoping my new ad will draw in someone. I know you would help if you could. You are just so sweet, I know you would help

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  8. Terry my entire being hurts for you, it is such an awful time for you and Al. Terry is there a local nursing home? if so call and see if someone there would like part time work to help you, heck call the local hospital speak to the director of nursing they use CNA’s too, that may work for you. I don’t know how close you are to a big city but hospitals, nursing homes, vocational schools are all pools to draw from. Really put pressure on the doctor to keep you informed honestly about how much time Al has. Also ask the doctors nurses if they know anyone that could help you, as hospice is supposed too. Prayers for your strength and know God will carry you when you need it most. Love you~Len

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    • I have asked nursing homes. I have not ask our one hospital. Hospice does nursing, at least ours we use. They will train and pay some help but it is up to me to find it. I placed an ad that came out today. I had a few calls but they didn’t work out. Then I received one call from a lady. I hope to meet her soon and then she would have to go through the training. Let’s pray she is the right one

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  9. Terry if you are on new blood pressure meds that may be why you are feeling flushed and dizzy, please keep a record of your meds and your bp readings to show your doctor. It sometimes takes a while for the meds to work properly and you need to keep track so the doctor will know if your taking too much or too little he can then adjust dosage.

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  10. Your blog has touched my heart. I can relate in a lot of ways. My husband also has MSA. He has not progressed to the point that Al has though. On his bad weeks, it is hard for me physically also. I too am battling high blood pressure. Since the neurologist told us that there is nothing more he can do and it is all down hill from here, we refuse to believe that. We have started going to a Dr. of Naturopathy. Sam(my husband) is now taking Hyperbaric Oxygen Therapy and is on a mineral regimen. It seems to be helping in different areas. He had a Tramatic Brain Injury 13 years ago and they have been having good success with TBI with the oxygen therapy. We are believers and we know that God is the great physician. If it is His will to heal Sam then he will. In the mean time we need to be faithful and trust in God and his sovereignty. I am praying that the right person answers your ad and that they will be a person of compassion who can be a big help to you and Al. HUGS!!!

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    • I did some checking and no one will pay for any natural therapy. I do rely on God to take Al to where he needs to go and for strength for me to continue on. I hate this illness. It is wicked, there is nothing nice about it at all. So nice to meet you Lavern and I am sorry that you are understanding exactly what I go through. I pray for you and your husband

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  11. Sweetheart you weren’t asked to do it by yourself so, let down your guard and fears, let others serve and learn what you’ve learned, that’s a blessing they can’t learn by themselves dear; even Christ received aid from an angel Terry ~ Be wise & kind to yourself too. Always praying for you two. Faithfully Debbie

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    • Hi Debbie, so nice to get to chat with you again. I pray the ad works. I had a few calls but each of them already worked and their hours didn’t work with mine that I needed and I think I am pretty flexible. But one lady responded and she sounded perfect. We are supposed to meet this week. If she is interested she will then go to training. Let’s pray it is her that is my new angel

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  12. Regarding your going out to get groceries: is there a Meals On Wheels program in your area (or something similar)? If you discuss this need with the hospice people or a social worker, they could perhaps connect you to this type of service. It could prove to be a big help, as it would save you time, work and mess of food preparation.

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  13. What an odd comment from the doctor, each day everyone is closer to dying! I suppose he meant that Al will feel weaker, but we all have good days and bad days too. Do what you think best about the day programme, you know Al better than anyone.

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    • It is isn’t it? All of us are getting a day closer to dying. I think you are right though. He was actually trying to say Al is getting weaker and weaker and his time is nearing. I let Al decide if he wants to go to Day Program since he was able to tell me he didn’t feel good enough to go yesterday. He says he wants to go tomorrow, so we shall see how he feels in the morning. Day Program is good for him but makes him weak. But laying in bed every moment is depressing for him and a sure way to give up on living. You are right, there are good days and bad days. The bad days seem to be taking over but today finally was a better day. He is still very weak but he ate good today, and sat in his recliner for ten minutes

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