Hello From Mississippi!!!
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Dear Brenda,
I am sending prayers your way. My mother was talking to her mother as well. I think is means, she is there in spirit, and is with him. Ask about roxinal it can be given under the tongue and works faster than morphine, they can also use a patch to help with pain. My mother was in and out. I would ask the doctor about in home hospice, to make sure he is comfortable at all times. Please keep us posted and know we love you and are here for you.
Hugs always,
Roni
ronidinkes@yahoo.com or you can find me on facebook.Hi Brenda, I was just reading through your posts and your story is very similar to mine. I lost my husband Doug last September 14th after being together over 35 years. I have 3 children, too. I am sorry you lost the love of your life, Don. Just wanted to let you know my heart goes out to you and your children. I am glad you have some good support. The days ahead will be a fog, but somehow we make it through. So sorry to hear of the loss of your brother in law as well. We wonder sometimes how life can be so cruel, but take comfort in the fact they are together again. One thing that helps me is believing Doug is in an awesome place, where there is no physical or emotional pain. I picture him saying ” Wow, this is beautiful, wait till you get here!” You will laugh and you will cry. This is a tough journey we are on and not one of choice, but in some strange way I feel Doug helping me through like he always has.
Hugs to you and your family. NancyBrenda,
I’m so sorry to hear that Don passed away and you are now dealing with another death in the family. It is almost too much to bear. Know that my thoughts and prayers are with you and your family during this very sad and trying time.
Keep Don in your heart and memories. He will always be with you. I know it is not much of a consulation for you right now, but atleast Don is no longer suffering or in pain. Hopefully you can take some comfort in that.
Take care and be safe in your travels.
Love & Hugs,
DarlaHey it’s me again.
Thanks for the thoughts & prayers. We buried Don on May 23rd and it was a beautiful funeral. I let our children pick the songs:
1. Heaven Was Needing a Hero
2. Live Like You Were Dying
3. Fat Bottom Girls….it was his favorite song….lol.
We had everyone there singing with the song. Everyone loved how we did it. I ‘ve tried to sleep in our room but have only done it once…just not the same.
While we are trying to heal from his lost…I received a call on Friday,May 25th. It was a call that we didnt plan to get…his brother in Florida had died. Two deaths in the family in 6 days…not sure how to handle this.
I guess that ny body is trying to recupe from the last few weeks cause all i do now is sleep. It’s hard each morning to get my eyes open so I sleep some more. Thankful that School is out for the summer and my 16 yr old passed his exams. He was promoted to the 11th grade with a 3.0 GPA. I am very proud of him.
Well getting off for now. Have alot to think about & to get done before leaving this next weekend for Florida. Please keep our family in your prayers.Dear Brenda,
I am so sorry to hear of Don’s passing. Please accept my sincerest condolences and know that we are here for you if you need us. My thoughts are with you and your family right now.
Hugs,
Gavin
Dear Brenda,
I am so sorry to hear of Don’s passing. Please accept my sincerest condolences. I hope that time heals your pain and I pray for God to give you strength.
Love, -Pam
Dearest Brenda I am so very sorry about Don. In your mind you know he is now at peace. But your heart feels it is breaking into pieces. Please understand that right now it is impossible to be “normal” in any way. Don’t think any further than what you need to do each day to get through to the Funeral. After that you will be needing to take care of a ton of paper work and legal things and then, and then you will let it all out until there is no more to let out. BUT, trust me, as the months go by you will gain your “new normal” and life will go on and bad things will dim leaving only happy memories with you.
From a book of blessings called “Benedictus” by John O’Donohue – Irish Poet & Philosopher
When you lose someone you love,
Your life becomes strange,
The ground beneath you becomes fragile,
Your thoughts make your eyes unsure;
And some dead echo drags your voice down
Where words have no confidence
Your heart has grown heavy with loss.
And though this loss has wounded others too,
No one knows what has been taken from you
When the silence of absence deepens.
There are days when you wake up happy;
Again inside the fullness of life,
Until the moment breaks
And you are thrown back
Onto the black tide of loss.
Days when you have your heart back,
You are able to function well
Until in the middle of work or encounter,
Suddenly with no warning,
You are ambushed by grief.
More than you, it knows its way
And will find the right time
To pull and pull the rope of grief
Until that coiled hill of tears
Has reduced to its last drop.
Gradually, you will learn acquaintance
With the invisible form of your departed;
And when the work of grief is done,
The wound of loss will heal
And you will have learned
And be able to enter the hearth
In your soul where your loved one
Has awaited your return
All the time.When someone you love becomes a Memory, the Memory becomes a treasure.
This was been a very tough 24 hrs. The love of my life of almost 33 yrs passed away on Saturday, May 19th somewhere between 3:40am and 6:30 am. He was having alot of problems trying to breathe. His oxygen was increased to 4 but it didnt help. I told him @ 3:35am that we would be okay…that I understand that he’s tire & we love him. It’s so very hard when you have never dealt with taking care of all the arrangements. My family has a very good support system…I have wonderful friends & family. A friend is going to help with funeral arrangements tomorrow.
Don fought a very long 10 months to the day battle. A cure needs to be found so that other families dont have to go through this pain of losing a love one.Eventhough he was only under Hospice care from Monday til Saturday..6 days…they made sure he was going to be hurting.
I am going to miss my best friend,lover and husband….don’t know how I’m going to make it through this. I am sitting here crying …I have loved him since the 1st day I saw him. It was love @ 1st site. Dont know when I will be able to step foot back in our bedroom…it brings me to tears when I just think about it.
My mind & heart are racing 90 to nothing. I’m just praying that I can sleep tonight.
Brenda….my heart is with you in this most difficult of times.
The enclosed link may help you understand and give you some guidance along the way.
http://www.amitabhahospice.org/public/helpful_info/signs_of_dying.phpPlease know that love will continue to surround you and your family.
Many hugs,
MarionSENSITIVE: Brenda, I am reliving everything, right with you and of course it breaks my heart for you. You see, how they are still smart enough, with all that is happening to know just what to say when told they did something. Brenda, Teddy had that kind of agitation and I know it is not pleasant to watch. I would ask Hospice if they can try something else (ATIVAN DID NOT WORK FOR T) and how do we know some of it is not pain? I ask myself that all the time. On the other hand he may be fighting for something, like a certain visitor. Teddy bever fought the oxygen as it did make him feel better. Hospice has a booklet that describes what will be happening at several time frames and T followed it really closely. Don pulls out the oxygen and the last day for T, not saying Don is that close, he didn’t even want his PJ’s or sheets on. Guess he wanted to go as he came with nothing on. One sign of gettting close is picking at his clothes and covers. No one seems to know why some of them do that and of course talking to the beyond. Brenda, do NOT be afraid. It is a process and not to sound trite but my daughter and I felt privilidged to be a part of what we saw. One more thing. When the end is here there could be a loud chest rattle. I understand they have a patch for that now you might want to ask about that.
If you don’t mind, I would like to post a poem here I wrote about 5 days before T passed. Please do not read it if it will upset you but at that time I wanted to let my feelings out.Time is growing closer, I can see it in his eyes,
Time is growing closer, but we’ll have no sad ‘goodbyes’.
Memories abound from our precious moments spent,
To God it is, I’m sending, the most “precious” package sent.These last few months of knowing, we’ve made a honeymoon,
In my mind a vision of an eternal, beautiful afternoon.
He is still my charming Prince, who taught me how to love,
And someday we’ll be together, in Heaven up above.I will see him riding stars, I will see him in the moon,
And someday you will see us dancing to our favorite tune.
He will touch my face so gently, like he’s known to do,
It’s not goodbye forever, with memories bad or few.All our love, my sweet one, is ours to hold so tight,
Until once again together on a mystical, magic night,
We will be again united to celebrate our dance around the sun,
And know that our eternity together, has only just begun.I was going to update on everything yesterday but slept most of the day…and so did Don. It has been so busy here with all the ppl from Hospice.
Monday- Nurse to check his vitals,meds & see what items she needed to order for him
Tuesday- Hospice nurse & a nurse-in-training, social worker and the delivery man bringing his bed,wheelchair and oxygen.
Yesterday-Hospice Chaplain,nurse and aide.They had ordered meds,which came…the box of emergency meds is what they called it.
Today or tomorrow is suppose to be the nurse again.
The nurse had said to give him his ativan b4 bedtime so he would sleep. I have done this for 2 night straight & he stays up, moving all the time. He would lay down for about 10 mins & then was up again…repeated this all night long. Had to use the oxygen last night because he was short of breathe. But he kept taking the nose piece out.
He is now resting in the recliner because he said the bed was uncomfortable. Last night our oldest son came by to see him & Don said he didnt know who he was. Also told him to get out….which upset our son. He left a few mins after that…I told him that his Dad didnt mean anything by it & that he still loved him. I then walked back in the room & Don asked where did he go. I told him that he told Donny that he didnt know him & yelled for him to leave. Don then told me …”I was playing with him…he should know that.”
Don is drinking less and only about a bite or 2 of food a day. Only went to the bathroom twice yesterday. Feet are still swollen and it hard to get him to put his feet up. Now he is constantly taking the oxygen off but he really needs it. Breathing is very short & he’s coughing now. And for some reason his right eye is very bloodshot. Going to get off & try to get some rest while he is resting & before the nurse calls.Oh and b4 I forget…@Lainy -thanks for the kind works. I mentioned what my friend had said about me to the chaplain yesterday. He told me that I was not in denial…that I very much knows what is going on & what is going to happen. That I will cry when I am ready. And if I needed to talk to call him and he would be back out here.
Brenda, I would like to give your “friend” a knock to the head. You are NOT in denial, you have been honest, strong and brave. She just wishes she could be like you. With that said, You have absolutely done all the right things. With Hospice coming in they will make him more comfortable and it will give you more time to just be with him. He is preparing and the best thing is to just let him talk and be and don’t forget the hearing is the last thing to go and he does know what is going on, even if we don’t think so. I can see it all again when I think about my Teddy so if you need to talk or email that is fine with me. I pray for his comfort and you just continue to be strong, there is plenty of time for tears later. Make this your honeymoon. That is what Teddy used to call it. Every time a new nurse would come he would say, We are on our honeymoon!”
In my heart, I know that he doesnt have much longer. He’s barely sleeping, talking to himself all the time & to his dead mother. Today he told me that he has a man-cave inside too. He keeps telling me that the guys are here to finish the work. I know he is talking out of his head.
What I dont understand is how a “FRIEND” of 35 yrs can tell other ppl that we know that “Brenda’s in DENIAL”. I just cant understand why she would do this. But that okay….I going to let it slide for now. I have more important things going on in my life. I have a husband that had loved me for almost 33 yrs and has provided for his family. He has never beaten me or our children like her ex-husband had done b4 she listened to me telling her that “she doesnt have to be with him…that there’s ppl out there that will help her”. She finally left & divorced him after 20 yrs of abuse.
Well this is all for now. Will try to update when I can. Been trying to cat nat when I can…hadnt slept but a few hours since friday.Sorry I havent updated… been busy trying to get some relief for Don. He was stopped the radiation to his spine…he didnt feel it was helping with the pain. Inoticed last Thursday that he was swelling from the calves down to his feet. Contacted his oncologist & was prescribed Furosemide to take. And decided to have Hospice come in. A nurse visited on friday & was getting ready to order the bed & other equipment that he would need. Then his insurance decided that if we used this hospice that we had to pay $4,500 upfront and the ins would pay 75% after that since they were out of network. This nurse took it upon herself to contact the 3 hospices listed that were in network & none of them would come into MS….they were in TN And Arkansas.
The Insurance then told her of 1 about an hr away south of us. That nurse came out yesterday and another one will be here shortly. The insurance will pay 100% after his deductible of $1,000 is paid up front…thanks to his younger sister & her husband it will be paid this afternoon. Hospice is going to schedule an aide to come starting tomorrow for 2 days a week…& if needed they can add more days.Brenda…the pain can be controlled. In the numerous postings regarding bone pain these medications have been mentioned: Dilaudid, Fentanyl patch, synthetic methadone, morphine with Hydromorphone for breakthrough pain, Oxycontin and Oxycodone, Zometa. It is important to stay “on top of the pain” meaning that the medications must be taken regularly. Please, speak to your husband’s doctor about pain control.
My heart is with you,
Hugs,
Marion
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