Condemned to live in nightmares

[strider]

Friends, my heart is very heavy, and I am sorely in need of some encouragement.

My aunt is just six years older than me. She has five children aged 4-11yo. Her children stay with me two nights a week. My aunt was diagnosed with a brain tumor nearly four years ago. Since then, a surgery left her brain-damaged. She is a lot like an Alzheimer's patient and currently lives in the county nursing home. She has terrible anxiety and frightening delusions each. and. every.day. She is homesick and misses her children badly.

After her second surgery her doctor told me she would die. He recommended hospice.

Her husband, my uncle, chose to try chemotherapy and radiation. The odds were completely against this having any effectiveness. She did nearly die during this process.

I went with my aunt and uncle to an appointment with her neurologist today. I thank God that I was able to be there--speaking directly to her doctor personally was priceless.

Her tumor has dwindled--the chemo/radiation actually worked. There is a cyst still there that may or may not be causing some of her symptoms. But, most of her cognitive delays are permanent, as a result of her surgery. I knew that the brain damage was permanent, but I did not know that the tumor had shrunk so significantly.

The bottom line: My aunt is likely to continue as is indefinitely. The tumor may grow back, eventually. In other words, she will creep around like a hunched old woman, living with nightmares, indefinitely.

[Amy loves Bud]

Oh, Strider. What a heartbreaking situation. You,your aunt and uncle, and their precious children are in my prayers.

I'm sure it means the world to your uncle that you are there for his family through all of this. And you are blessing those children beyond belief.

:grouphug: for you Strider. I'm so sorry for your sadness.

[Mrs Mungo]

That's terrible, I'm so sorry your aunt and family are going through this.

[sleepy]

Oh, Strider, that is so terribly sad. Heartbreaking. :crying:
I can't even imagine how hard it must be knowing you can't do anything to make her better. I'm so sorry. :grouphug:

[SheilaZ]

Oh my goodness...it is heartbreaking for all involved. I am so sorry for your Aunt, her husband, and those poor children.

I know you feel helpless but you are doing the family a great service by taking care of the children each week.
I'm sure your Aunt and Uncle think the world of the help that you are giving them.

[Heather in the Kootenays]

:grouphug: How heartbreaking.

[Mamagistra]

How hard this must be! I pray that your aunt can be helped, that her awful visions would cease. Peace be with you as you bless you those children and your uncle, (((Strider))). :grouphug:

[Jennifer in MI]

This is so sad. I'm sorry. :grouphug:

[Mama Lynx]

Oh, Strider, I am so sorry. I cannot imagine.

Miracles can, and do, happen. I'll pray for one for your aunt.

[Nakia]

I am so sorry. As a nurse, I have taken care of people like your aunt. It is devastating and, again, I am so sorry your precious family is suffering. You will be in my prayers. :grouphug:

[Mosaicmind]

This sounds heartbreaking. I pray that you will be given God's strength during this time. Praying specifically for her dh and dc as they watch their beloved wife and mother suffer here on this earth.

[Mom2legomaniacs]

How very difficult for all. I am sorry. :grouphug:

[genie]

I'm so very sorry. It is truly unimaginable. I have no doubt that you will be an incredible blessing to her children. :grouphug:

[mom2abcd]

strider,
I just want to write a word of hope. They are making tremendous strides in medicine today and who knows what might help your aunt/friend in just a few months or years. Please keep your eyes and ears open to message boards, etc. for people whose loved ones have similar brain problems. Keep your ears open for doctors who may have a special interest in this type of thing and know of new ways of helping.

My brother was born with brain damage and while life was not easy for him or us, he was a Blessing with a capital "B" to us!!!!

I don't know of a book of encouragement specifically for this type of challenge, but you may be encouraged by a book sharing the blessings that people with Down's Syndrome can be...
Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives (Paperback)
by Kathryn Lynard Soper (Author)
http://www.amazon.com/Gifts-Mothers-Reflect-Children-Syndrome/dp/1890627852/ref=sr_1_2?ie=UTF8&s=books&qid=1213840015&sr=8-2

You do not walk this road alone. There is One who invites you to share your burden. May He help you and your loved ones through this challenge of life this side.

[Amy in Orlando]

((((Strider)))) I'm so very sorry for you and your aunt and your family. Of course, you'll do what you have to do, but that doesn't make it any less heartbreaking or easier. I'll keep you all in my prayers.

[gardenschooler]

I'll be praying for a miracle. What a blessing you are to them, strider. I'm so sorry.

[paula j]

Praying for your aunt. She has already beat the odds and progressed more than the drs said she could, who's to say she won't have complete healing.

[Remudamom]

That is so sad I don't even know what to say, but I will pray for her.

[love2read]

Have they tried changing her medication for anxiety? Have they tried a different neurologist? Do not loose hope and continue to seek alternative therapies. Believe in miracles and pray for one.

[GSMP]

That is so heartbreaking.....:grouphug: My thoughts and prayers for you and your family. I couldn't imagine......Your poor Aunt.

[Mom to Aly]

I am so, so sorry! On thing to consider, medicine has advances all the time, and this might have bought her the time for an amazing cure that is coming her way--it happens every day. In the meantime, my thoughts and prayers are also with you and your aunt and her family.

All the best...
Kiran

[OnTheBrink]

OH, I'm so sorry. :grouphug:

[Mabelen]

I know how terrible it is to see someone dear suffer like this. My dad had Parkinson's disease and suffered a lot. Once, before he totally lost his speech he told me it was hell, and he really meant it.

I feel for you and your family. You are doing so much for your aunt and her children. I hope you continue to have the strength to be there for them. My thoughts and prayer are with you and your family.

[Leah]

So sorry! I will be keeping your whole family in my prayers. I cannot imagine what is before all of you, but I am touched by your deep care and concern.

[Kelli in TN]

Please don't lose hope. The right therapy or medication or surgery might be in the labs right now. Help could be around the corner and we just can't see it yet.:grouphug:

[Mekanamom]

:grouphug: I'm sorry...

Hugs for everyone. Don't give up hope.

[summer]

Wow, that is really sad. It comes down to quality of life. Is there anywayy she can come home to live again with her own children despite her delays? Maybe come stay with you when the children are with you? Anything? I am tearing from how sad this is. If I were living through it..well, i just would not want to imagine that. (((hugs)))

[klmama]

(((Strider))) I know this has been a long, hard process already, and now it seems there's no end in sight. I hurt for your dear aunt, her dh and dc, you, and the rest of the family.

God wants us to pray for others, so I just did and I will continue. I won't just pray for everyone to get through this, though. I am praying that God sends a miracle to your aunt so she will recover from this. Just because a doctor has spoken doesn't mean it will happen the way he said. Only the Great Physician knows what is really possible, and with God, all things are possible!

Also, an aside... because I was still up praying for your aunt and typing this response, I was online when my dad sent me an email to tell me about a biopsy he's having very early in the morning. So, now, I've prayed for him, too, which I wouldn't have known to do if I hadn't still been up. God is good!

There was a very dark time in my life about 8 years ago, and this song helped get me through it. I think of it every time something big comes up to alarm me. Maybe it will help you, too.


"God is Good" by Don Moen

Chorus:
God is good all the time
He put a song of praise in this heart of mine
God is good all the time
Through the darkest night, His light will shine
God is good, God is good all the time

If you're walking through the valley
And there are shadows all around
Do not fear, He will guide you
He will keep you safe and sound
'Cause He's promised to never leave you
Nor forsake you and His Word is true

Chorus

We were sinners - so unworthy
Still for us He chose to die
Filled us with His Holy Spirit
Now we can stand and testify
That His love is everlasting
And His mercies - they will never end

Chorus

[Sparkle]

Holding you in my prayers, strider :grouphug:

[Lizzie in Ma]

You are such a blessing to those around you.

[Doran]

You know that I deal with some of these issues on a different level, with a father who is aged and demented. The things that trouble his mind can be so awful, and it aches to know that he is miserable much of the time. For this to be happening in one so very young makes it that much more inconceivable.

I had this crazy thought, though, as I read your post and joined it in my mind with your plea for garden help yesterday. Forgive me if this feels way off base.

Is there any way that you and all the kids (yours and hers) could take on a piece of your yard/garden together, to create a little sanctuary for her? I don't know if she can come visit or not - if she could, how lovely it would be to have a garden to sit in and watch and smell and touch. Just having a peaceful space dedicated to her, even if she's not well enough to be there physically, might give you and her family something beautiful to offer her and yourselves despite all the pain.

Sending strength and sympathies.

[strider]

Your kind messages have been a real comfort to me.

To answer some specific concerns:

--My aunt cannot go home because her delusions create an unsafe situation for the children and her husband. She mixes things up in her mind and thinks at times that her husband has beat her or hurt her in some way. It is purely delusional (we know this beyond any doubt) but the possibility of a DCFS investigation is something we do have to be proactive in preventing. Her children have been traumatized enough! Also my uncle cannot afford a babysitter for my aunt, whereas the state will pay for nursing home care.

--I cannot have my aunt over at my house when her children are here for a couple reasons. One is that her nursing home is 45-60 minutes from my house. It would be a major undertaking to go get her and bring her all the way back into the city. Another reason is that I have only enough seats in my car for one driver and all the kids (hers and mine). When I have the kids, if we all want to go somewhere as a family my husband has to ride his bike. Another reason is that, while she is terribly homesick and does not want to be at the nursing home, she is well acclimated to its rhythms. Even a short excursion is exhausting and disorienting to her, much as she loves being out. For her, getting overtired means her delusions and sense of panic become much stronger and scarier. I do take her out even so, for short excursions, because she loves it so much--we go to Target or a local petting zoo or the park. Both my uncle and I take the kids to visit her quite a lot--she sees them 3-4 times every week.

Thanks again for your words of comfort. I needed that sympathy. Thanks also for your prayers--I pray for and end to suffering and for peace for her every day.

[laughing lioness]

I dont' know if you have heard of this type of therapy: EMDR
Eye Movement Desensitization and Reprocessing
www.emdr.com (http://www.emdr.com)
It has been used with great success with for those who have experienced trauma (PTSD). I'm not sure how effective it would for a brain injury, but it might be worth checking out.
Perhaps it would alleviate the nightmares?

:grouphug: to you and your family!!

[Jackie in AR]

I'll be praying for a miracle.

((strider)) What a blessing you must be to her family.

[Mabelen]

Thanks also for your prayers--I pray for and end to suffering and for peace for her every day.

I understand. When my dad finally passed away, it was such a blessing. Yes, we grieved for him passing away, we reallly did, we loved him; but really we had been grieving for him for the last couple of years, his passing away was actually a blessing, he really finally got to rest in peace.

I will pray with you too.

[*anj*]

Thank you for giving us the latest details on your aunt. Once I started reading her story I remembered that you've told us about her before, back when you were thinking about moving away, right?

I will pray for her and for all involved. What a sad, sad story.