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jessielf

Active member
Joined
Dec 26, 2011
Messages
66
Reason
Lost a loved one
Diagnosis
08/2011
Country
US
State
WI
City
wis rapids
Well my mom isn't doing to good getting worse rapidly it seems. By her choice she started Hospice this past week. She is very weak and can barely talk and she has been having more problems swallowing food too. She is also getting other help to so for now on all her bills will be payed what ever my dads insurance doesn't cover medicare or something like that will up til age 55. They are even going to pay for a ramp to be put in. Working on getting a powered wheel chair so she can be more mobile. We went over all what my mom needs too. She is in the process of a voice box they are just programming it for her. I have started going there more often so she doesn't have to stay in bed all day and to help her out. Also she ishaving a hospice nurse once a week, and acouple of aids acouple times a week. Then some other nurses from community care should be able to come over too. Oh and a clergy person too. They are making a schedule so it covers when my sister or I or my dad aren't there that someone is able to come in to check on her. She still thinks she is going this year and isn't afraid of dying. My dad is having a difficult time w having hospice because he thinks they are taking away his part of caring for her. My sister is lowering her work hrs to be w my mom acouple days a week. I have about 3 1/2 weeks before my baby comes she is still going to be in the room when I deliver but don't think she will be able to stay w me like she planned. I wish she could I was looking forward to spend that time w her and the new baby. I just can't believe how much things are changing so fast. I am still trying to take it day by day and spending as much time w her that I can. I wish that her progression was slower so she could be around longer but I guess that's not part of Gods plan. She won't be going on any tubes or into a nursing home facility. She has a box in the fridge from hospice w pain meds including morphine. She hopes to go before she gets really bad. It seems so surreal and all a bad dream, but it isn't. I just hope that we have a great summer w her and are still able to some things w her w the kids like going to the park so she can enjoy what ever time she has left w us. The kids always makes her laugh and keeps a smile on her face. I wish she would have more of a will to live but she doesn't and isn't afraid to die. She is willing to go, if it would be her way she would go tomorrow. I know I don't now how she feels and everyone deals w it different. She said it would be different if she didn't progress so fast and could talk, eat and move better. But when she progresses its been affecting everything at the same time and not just one area which sucks. I just keep telling myself regardless of this disease God will take her when it is her time.
 
I am so sorry! I feel my husband's progression is faster than either of us have thought. We are trying to live each day as fully as we can because we know that this is going to get worse....I'm praying for you and yours, this is not an easy road.

Jen
 
Jessie, I'm so sorry to hear about your Mom's progression. I hope your experience with Hospice team will be as positive as ours was with my Mom. It's so good that you have some help for your Dad. Take care of yourself over the coming weeks. Sounds like your Mom has made her peace but is still willing to get out and do some living in the meantime. Keeping you in my thoughts and prayers.
 
Deb, Yes hospice has been a blessing and have been really really nice and gets what my mom needs right away and is so very helpful.
 
Count it as a blessing. There is no cure so why hang around with it. The sooner the agony is over the better. Many fine folk have lingered in its grip for years. Better to go swiftly.
 
NOT helpful Hangingon.....not at all, now one more time....SHUT UP!
 
And, the ass is back.... I'm sorry, Jessielf. Hanginon1 can be so offensive. I know you want your mother to be there when your baby is born! She will be in my thoughts and prayers!
 
Yeah I see that wow he needs ALOT of help! He doesn't bother me, I think he has alot issues that he needs to over or something so he lashes out on here. I ignore him:) My mom is in good spirits and I think she likes it that I'm coming over more often:) Thanks for all the prayers!
 
Hanginon,
This is my first night joining this site. You are giving me a scary first impression of a place I went to for support. Jessielf, my mom was just diagnosed last Tuesday. I understand......
 
Count it as a blessing. There is no cure so why hang around with it. The sooner the agony is over the better. Many fine folk have lingered in its grip for years. Better to go swiftly.

Everyone can tell your not the one with ALS you know you could go before your wife. I told my husband to put me in a nursing home but he said they wouldn't take care of me like he does I can not imagine what your wife feels like living with you knowing you are wishing she would die. My husband brings me flowers every two or three days from our yard. Every night he tells me he loves me before he goes to sleep
 
Jessis, I am very sorry your mother's progression has been so fast. It must make it even harder to cope with less time before more changes occur. We can all sympathise and understand how very much you want your mother with you as long as possible, to share all the joy you can as a family as long as you can. So very many people say how thankful and helpful they have found hospice care at what is one of the most difficult times and I feel sure you and your mother will continue to fine the same.
I am sorry that hanginon said the things he did and I hope that I have not upset you further by telling him off. If I have I am truly sorry.
Izzy, It's a shame this is how you found us your first night. Please believe it is not typical, most, 99.99% of the people here are lovely and will bend over backward to help you. It's most unfortunate that a very few are the way they are. There simply is no excuse for them regardless of their own pain or mental condition. Please come back and participate, I feel sure you will find it helpful.
 
The flesh is so temporal. The Bible says life is like a vapor. Whether you live to 100 or die at childbirth, your spirit lives on. Your spirit man does not have diseases. It needs no support group. It was born in the mind of God before you were born and if you believe in God's blood sacrifice,Jesus, who, by the way says No one comes to the Father except through me. It seems your Mother believes in the truth. She will be so much better our of the temporal carcass of flesh and into an eternal existence.
 
Most people fear death. That is why there is panic when someone dies. Jesus says because I live you will also, just believe. Paul says that Jesus has taken away the sting of death. Als is definitely a sting, but it is not the only sting. So many people live for the temporal. What I eat, how I feel, how much I make. Some are hypochondriacs who do not no how to live for fear of dying. Life is like a vapor, all of us wind up in the grave. When you are young you do not think about it. Middle age it is in the back of your mind. Older age you realize that you could go any day. Oh the comfort of knowing Jesus as your atonement. His blood will allow you to enter the holy of holies and see your Creator face to face. In my Father's house are many mansions. There is a mansion for all that believe on His precious redemptive blood. For those that do not there is hell and damnation. I did not say it, Jesus did, He said very plainly NO man enters without the shedding of My blood. He also said that to the world this would be foolishness, but to those that believe it is the POWER TO SAVE. My Lord's Hebrew Name is Yeshua, it means Salvation. Without the shedding of blood there is no forgiveness of sin. What false substitute have you offered up to God as redemption for your sin. Maybe works, maybe being a good person, maybe loving the earth? All these are not acceptable to the great God of Abraham, Issac and Jacob. Elohim wants acceptance of his only son's sacrifice which was His blood on the cross. Accept Him now. Ask Him to visit you. Ask Him,If you are real show yourself to me. Prove yourself if you a a phony, I will know it. He says all that call upon the name of the Lord will be saved. He does not lie. He will answer you and heal your confusion, He loves YOU. Yes You! He is a gentleman and will meet you halfway. Try HIm Now!
 
Dear Jessie,

Welcome to the family nobody wants to be a part of. And as you can see, we have an occasional black sheep in our fold. I am so sorry your mother is progressing rapidly. I have heard others mention a fast progression and then a plateau. Prayerfully that is what will be next.

Prayers,
 
Hanging...not all who are here are Christian. You do not know our circumstances or religious histories. Please try not to be so abrasive or judgmental. We are here to support each other.
 
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