The Suffering Continues

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The Suffering Continues

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rock-288776_640So "Hi"!  It has been awhile since an update - so sorry about that.

I feel like I am treading water with just my nose breaking through the surface while the rip tide tries to drag me under. Only one more week of active detox! It has been a very long and tedious and frightening four months. There is a light at the end of the tunnel, we hope!

Last week I actually had a glimpse of our life before Mom was ill!!! I was bouncing off the walls excited! I saw her brain waking up and she actually asked to play board games!!! I could not believe it! She said she felt like she was "waking up" after a decade long, unwanted coma. She said her brain felt better, less hazy/fuzzy/dead. It was a very exciting time.

The downside to the brain waking up is she is thinking constantly and I MEAN CONSTANTLY!!! Every time, without fail, that I would go and check on her, she would have a to-do list a mile long! I was running like you would not believe!

This detox has been the worse and so along with the brain that never stops, she doesn't sleep more than an hour or two a day and so I am not sleeping much either! She has restless body so she feels like she can get up out of bed and do things, which leads to falling, or smacking her head, or running into the walls or somehow injuring herself etc. Her brain is there but her body isn't cooperating!

About two weeks ago she got in her chair because she had a headache. (Many times she will move around or get up and have no idea why. Keeps me on my toes!  Can I tie her to the bed?) She came out to ask me what to do about her head. I told her I would fetch her some ice and asked her to get back in bed. Well as she was driving her chair back to her bed, she decided to close her eyes because her head hurt and she ran herself at full speed (she REFUSES to go slow in her chair- she likes speed!) into the wall and I believe snapped three of her toes. I ended up getting two bags of ice, one for her head and one for her foot. And, no, the pain in her toes did not diminish the pain in her head!

This week has been MUCH harder and I feel like that glimpse that I had the week before is long gone. This continual migraine (that started when we started this last detox) and the lack of adequate sleep is getting to both of us. We are both beyond exhausted.

Poor Mom, EVERYTHING bothers and annoys her from light to sound to smell to touch. We both keep reminding ourselves and each other that we are allowed to be mad and irritated with the disease and with the detox but not with each other. That helps keep us sane :)

Please keep praying for us. We are on the home stretch and I don't think we will be running full force to the finish line, we will be crawling and maybe only our finger tips will touch the finish line with tears and dirt running down our faces, but we will make it, Lord willing, and we will cross that finish line together. We are also praying about once the detox is complete. Will this full body fire that has gotten 10 times hotter continue? Will she finally be able to sleep more than an hour at a time?  Will the hallucinations continue? What about this rebound migraine, will it ever subside? What will her life with full body RSD look like without any pain medication? Do we try new meds and if so, how long do we wait? Do we even want to think about more meds? When will the pancreatitis subside? Will that pain ever go away? So many questions that can't be answered until we are living them out.

I am praying Mom and I will leave it all in the Lord's hands and just take it moment by moment. We don't want to worry about tomorrow, we have enough to deal with today. Just today Mom and I were talking/whispering. She was telling me how everything is affecting her and how much agony she is in. She keeps telling me she is hanging on by the skin of her teeth, she is just about at the end of what she can handle. I once again, and through tears and a cracking voice, told her if she needs to let go, it is okay and I understand. Through tears  and equally cracking whisper she told me God made her tenacious and she is going to hang on, she will never let go, she will keep fighting for life with every breath God grants her. She is fighting SO hard but her body is SO weak. All I can do is lift her up to the Lord and ask that His will be done. I know He loves my Mom more than I ever could. He knows what is best and He has a plan, and we trust Him completely.

A friend of mine came to the house yesterday to try and see if we can  enroll her into hospice since I have not been happy with the palliative care. After talking with her we decided she isn't ready for hospice and I will give this company that does palliative care one more shot before moving to another company. This current company has sent a nurse out once since August of last year. I have called numerous times but nothing is done. I finally went there in person today and asked them if I needed to seek out another company because I need help here. They set me up with a home nurse visit as well as a social worker visit next week.

I am also going to get a massage appointment for Mom. With these headaches I am wearing the masseuse hat about six times a day and my hands are exhausted! Thankfully this evening I was able to ease Mom's poor head with massage of her head, neck, shoulders, and feet. After about 40 minutes my hands were dead so I had to stop. I will go in in a bit again and do some more as long as she isn't on fire too badly in those areas. Thankfully massage seems to relax her a bit and then her headache eases just a tiny bit. Trying to keep her calm has been so challenging as of late, and getting off of anxiety medication doesn't help!

I called the pharmacist tonight to see if she had any ideas up her sleeve to help with rebound headaches. She suggested I up her meds and see if the headache goes away. I am NOT going to up her after we have taken so long to get her down! And if the headache does go away, what will happen once I start taking her down again? I won't allow her to suffer just to prove a point! It is nonsense!

So we will continue to get her off of it. Monday she goes down to 2.5mg/day and then Sunday the 12th evening is the last dose. That day can't come quick enough! Well now I am just blabbing so I will end it here.

Thanks for listening to me, I hope this makes some sort of sense, I am so tired my eyes are twitching. I hate that!  Anyway, blessings to you all and Happy Easter!!!

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jan

You both are so brave and so committed to each other. I still can't imagine doing this, or the capacity of the human body to heal and regenerate itself after so long a chemical regime. Know I'm rooting for your success and your stamina and your mother's healing.

Hansolosgirl

Okay, my question was answerd about why. Weird, my SIL was in end stage liver falure for 3.8 years and was never not on pain killers. Not for one day. She took them the entire time. She only did not take any tylonal and only occasionally Motrin. She was in end stage liver falure (working at less than 8%) all of those years and those were the worst on her.

lookingheavenward

She had to be taken off all of her pain medication because she was going into liver failure. And we found that her pain is about the same without the medication so I don't think it was really doing anything for her but depressing her system. Her pain is still at about a 9 out of 10 pain...and that is where we were at while taking 32 pills a day. So detoxing has been good for her, she is thinking clearer and she is breathing more as well. We are happy we are doing this, but it is a nightmare nonetheless.

lookingheavenward

I want off the ride now LOL!! I know that Mom's and my relationship is a blessing from the Lord - we honestly get along great and love each other deeply...it does make caregiving SO much easier! Thank you so much for the prayers -we feel them! Blessings to you and Happy Easter!

Denise

You are running, LH!! \r\n\r\nAs hard as everything has been, you are really on top of the situation. Good for you for demanding more from the palliative care agency. Please let us know how the visits go next week.\r\n\r\nI so hope today brings quiet time for both you and your mom. \r\n\r\nThanks so much for keeping us in the loop. Happy Easter!