What every parent dreads

Some of ya'll may recall that my 27 year old stepdaughter Miranda has been suffering from Juvenile Huntington's Disease. For those that don't know what that is. It is a degenerative brain disease. The juvenile form is more aggressive. Life expectancy is 8-10 years. She will be entering her ninth year from diagnosis in a couple of weeks.
She is not doing well at all. Major declines in the last few weeks. A few trips to the ER, hallucinations, loss of what few abilities she had left. She's home with us, but likely has no clue where she is. We all know how hard it is to watch a parent waste away before they pass. This is a very similar situation. Except it's someone who should be out enjoying their 20s. I'm a tough SOB. But this is heartbreaking to watch. I'm also never at a loss for words. I don't have any to say to my wife to make her feel better. I know my role is basically to be her support system, so I'm doing my best.
I never pushed the subject of when this time comes. I figured she would talk about it when she was ready. Last night she was ready. She knows Miranda's time is coming to an end fairly fast. She knows I'm there through thick and thin. I just couldn't find the right words to ease her emotional pain last night. Not sure if I will ever have the right words.
I would like to ask the OT for prayers and good vibes. Miranda is past the prayers for healing stage. Prayers for comfort would be appreciated. Prayers for my wife would also be appreciated. She's going through what no parent should ever go though.
Miranda had already been diagnosed when I entered the picture. I have never known her how she was previously. But I have watched the decline up close. Let me tell ya'll it's a terribly relentless disease. It's brutal on the patient. Takes it's toll on the caretakers who are often family. Not much is even known about it. My wife is probably one of the few non doctors who has extensive knowledge. Miranda's neurologist took on his first case just over 20 years ago with my wife's late husband. He has since went head first down that rabbit hole. Considered one of the best in the field when Huntington's is concerned. He will ask my wife for opinions. Listens to her, and respects the he77 out of her. She's been told by him and his staff how much respect he has for her knowledge of it. We will probably donate her brain for research. The wife will be calling about that this week. Her late husband's brain ended up at Harvard. Miranda's likely will also if we can get it set up.
Sorry if I come across as rambling. I'm just sitting here while the house is quiet with my thoughts. I don't share too much of my personal life online. I use social media to goof off mostly. The OT has been my primary online home for 17 years. I've made great friends here, and a few enemies. I trust when prayers go up from here, they actually go up. And they need the prayer now more than ever.
Thank you.

Nothing is as tough as losing a child. Prayers offered.

Rick, praying for God's grace and peace for all.

Done. I hope that you and your wife will be comforted.

Prayers up for your family and Miranda

Prayers for peace.

Sending yall peace and love brother.

Will be praying for Miranda, you, and your family. Always know that the Lord Jesus Christ has control and will see you through very difficult times.

Rick,
I can’t imagine anything more difficult and heartbreaking. I’m sure you are at a loss for words because there aren’t any in this situation. You, your wife and Miranda have my prayers.

Prayers up for grace,strength, and peace to you all.

That’s tough man. Prayers for all of y’all.

Prayers for you and your family going up sir.

thoughts and prayers are with you and your family....

... Dan

For the family.

Thoughts and prayers for you, your wife and Miranda.

That’s a tough deal. Praying for her and all the family. 🙏

I'm so, so sorry for pain and suffering you all are experiencing. I cannot begin to imagine it. I will pray for Miranda and that God gives you and your wife all the strength needed in your time of need.

Prayers up for you and your family.

Prayers up!

This is the only pic I have of her. It was taken on her birthday in 2019. Also the last time she went out to have some fun. She started slowly declining shortly after. That's not me in the pic. It's Dallas Moore. He's a friend of mine. I got ahold of him ahead of time, and told him we would be at that show. He treated her like a VIP that day. Dedicated a song to her. Came over and talked to her for a few minutes. She had a permagrin for a few days afterwards.

Prayers for all.

prayers sent

My heartfelt prayers to Miranda and your family Rick

Prayers to you and your family

Pretty choked up reading this Rick I just can’t imagine having to deal with this terrible disease for a child.

Rick.....praying for comfort for Miranda and praying for your wife, too. Praying for all of the family....

This makes my heart hurt and my eyes water. Will be praying for y’all and that comfort and peace finds all of you.

Rick, what is your wife’s name?

Tina

No words can help. Just being there to cry together, give hugs when needed is all anyone can do. I asked God to either heal her totally or to take her under his arms and give Miranda peace.
Hopefully your wife's knowledge can help someone else in the future.

I nearly lost my son to a stroke and pray for every day I have with him.

Prayers for peace and comfort to all.

Prayers

Hate to hear that Rick. Praying for you and your family.

Prayers for Miranda, prayers for your wife, and prayers for you Rick.

Prayers up for your strength, compassion to comfort Tina and Miranda.
Prayers for you to be comforted Rick.

You said it best don't have words for you and your family

but I will say a prayer and keep y'all in my prayers going forward.

Prayers for the family🙏

I cannot imagine what you all are going through. My son died at 25 in a one car accident and that was very hard on me. Having to wait has to be unimaginably hard. I pray for you daughter and for the rest of the family for strength through this trial. Lord bless and keep you.

Hang in there ! Lots of love and big fat bear hug from your buddy nick !

I am truly sorry, Rick. A good friend of mine lost his mother to Huntington's a few years ago...she was in her 40's. He's 22 and just graduated university about 6 weeks ago. He's too afraid to get tested to see if he has it. Usually a parent has a 50-50 shot of passing it on, but in his case it's greater than 50-50 because his mom was so young when she was diagnosed.

All you can do is listen, hold her and love her. I will pray for her, you, and all that love her. Life just isn't fair, man.

Prayers for y’all, Rick. I can’t even imagine.

Prayers.

Ricks
Prayers for comfort and peace. I can not imagine what yall are dealing with.

Prayers to all the family

I had no idea y'all were fighting this battle.

Prayers for all of y'all !

Lord today we praise you, and give you all the glory! Lord you know Miranda- comfort her, comfort her family. Amen

Prayer for all of y’all

As a life-long Catholic, a Christian, I can still offer an old-west prayer in multiple forms.
"God" and "The Great Spirit" can be one in the same.

--Blessings and prayers to all--

J'che Apache Prayer and Chant of Good Health—Wahi’ Natives

Hoh wa pet ‘u chi
Hoh wa pet ‘u chi, téh hoh’

Hoh wa pet ‘u chi
Good health my friend
Hoh wa pet ‘u chi, téh hoh’
Good health my friend, my brother

Hoh wa pet ‘u chi
Good health my friend
Hoh wa pet ‘u chi, téh hoh’ téh
Good health my friend, my brother/sister/father/mother/husband/wife/child

Hoh wa pet ‘u chi
Hoh wa pet ‘u chi, téh hoh’
Hoh wa pet ‘u chi, téh hoh’ téh

Much respect for you stepping up to be that rock your wife needs right now. I hope your wife can find peace one day.

Prayers for Miranda, Rick & Tina.

Ditto.

I can’t even begin to imagine the pain. Prayers for your wife and family.

sent

Prayers sir.

Bless you all!

My old girlfriend passed away from it last year and it got most of her family as well. It is a horrible, horrible disease. Prayers for you and your family Rick. I can't imagine how tough it must be for ya'll.

Prayers going out for you and your family

Prayers for all involved. My oldest brothers son passed away from Cystic Fibrosis at 18. It’s excruciating to see ones child fight disease. The ups and downs often living at the hospital way too often. Your family can take solace knowing you did everything possible for her. That’s all you can do. Fate is always difficult to understand and reconcile.

Maybe down the road your wife creates a foundation to help fight the disease or becomes part of one? Often that helps knowing you have been part of something that may prevent others from going through something so difficult. Maybe it’s a scholarship fund to help someone in a medical career doing research.

Be there for each other through the trying times. Take it a day at a time always trying to find positives as much as possible.

Prayers up Rick. I wish I could do more.

Praying for you, your wife and Miranda. Thanks for the support of your wife and for taking the best care of your stepdaughter possible.

Prayers for your family and strength to endure.

Prayers up for Miranda , Tina and Rick - God, shower this family with Your grace, mercy and strength from now until the very end.
I ask this in Your Son's name - my Lord and Savior Jesus Christ. Amen.

Bless your wife, daughter, you and all those involved. What a terrible ordeal and it's heartbreaking just what you've shared here.


Y'all are all in our thoughts and prayers Rick

Thoughts and prayers.

It's one of those diseases you just don't grasp how bad it can be, until you witness it first hand. The loss of motor skills is bad enough. But when their minds start to go. It gets worse than one can imagine. She's on the strongest psych meds available. They barely phase her.
I don't even think I could sensibly explain what this last month has been like. One day it was just business as usual around here. Then the switch was flipped. Yesterday evening she was sundowning bad. She will just scream out for hours. Probably a good thing our closest neighbors are an acre or two away. They would probably think we were torturing her with all her screaming. There is no comforting her when she is like that either. We think she doesn't recognize us at times.
I'm the lucky one in the scenario. I get to escape to work every day. Tina is stuck her practically 24/7. We do have a nurse that takes care of both Rue and Miranda. She comes while I'm at work. She's been with us for 3 years. So about once a month I take the day off, and get Tina out of the house on a day date.
Side note on our nurse. She has a family history of Huntington's also. She's been tested and some day will be in similar shoes as Miranda. I don't think I could do it myself. I couldn't go and see my terrible future on a daily basis. But God bless Stephanie. She does it. Fortunately she was off when Miranda got really bad a couple weeks ago. Ironically she was at a study for Huntington's in Wisconsin at the time.

She's been offered jobs in counseling families. She has turned them down for now. Too much on her plate with both Miranda and Rue. Rue has her own serious medical issues.
I have suggested a few times that she write a book for caretakers.

Prayers for Peace, Strength & Guidance during this difficult time.

So sorry , prayers for comfort for your family and strength to get through this.

I'm so sorry... I am proud of you for sticking by her side and being there. That's a big deal.

Prayers for you and your family. And thank you for sharing your journey throughout the years. It truly puts things in perspective when we are bickering about trivial things. You are a good man.