How long is this dying process going to take

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SnookieBow
Regular Member


Date Joined Mar 2007
Total Posts : 79
   Posted 1/23/2016 2:42 PM (GMT -7)   
My 85 year old mother lived with my family for 5 years. The past year she started having some forgetfulness, but was ok staying home while I worked. This fall on October 19 she complained of a headache. I had a dr. appointment for her on October 23 and the dr. thought she had a sinus infection. By Sunday, October 25 she broke out with shingles on her face. I took her to the emergency room, after diagnosis and pills, I thought things would get better. After a week I realized she was not taking her noon meds, not eating lunch or answering her cell phone. I called Home Health and scheduled a RN, a bath aide, and a PT. By the end of November I couldn't leave her alone. She wouldn't and couldn't get out of bed by herself. I had to sleep on the sofa bed because she called for me in the middle of the night. I had to go back to work and made the decision to put her in a nursing home. She seemed to understand I couldn't take care of her. She was losing memory terrible. She has been in a wheelchair since 2008 and has atrophy in her legs. She has severe osteoporosis and had 8 fractured vertebrae in her back since 1998. She weighed 110 in October and lost 14 lbs in a month. She didn't want to eat and refused to take her vitamins and supplements. December 1 I put her in a nursing home where she is on hospice. I was thinking it wouldn't be long before she would pass. She always told me she didn't want to live the way she now is living. It is so sad. She wants to come home, but I can't take care of her. It takes two people to pick her up out of bed, to the commode and to the wheelchair. She can not carry a conversation. Doesn't remember much. She asks me how she can get better and I tell her the truth. There are no doctors that can make her better. Jesus is the great healer and I gave her permission to go to Jesus. I gave her Tylenol for pain, but it wasn't enough. So Hospice nurses got the order for morphine. She says she is constantly in pain and they don't do anything about it. I found out Mom has been refusing the pain medication. I think she has so much brain loss, she can not comprehend. She fell out of the wheel chair and out of the bed. They put a monitor on her.

I have POA and she made out a living will and DNR long time ago. The quality of life is terrible. She talks, but it really isn't a complete conversation. She asks me how to make it better and how she can get out of the nursing home. I can't go see her every day and it just breaks my heart when I do. I don't know what keeps her going. She is just fading away. I am afraid she is going to end up with pneumonia and struggle to breath. It has to be easier dying in a coma than with pneumonia. I feel like I am deceiving her because I told her she could die at my house and I would be with her. She asked me what she could do and I keep saying I don't know. Can I tell her to stop eating and drinking and she will die and go to heaven to be with the great healer, Jesus? Will the nurses get concerned that I am trying to kill my mom? I know this is inevitable and she is suffering in a body that can't do what it could a year ago. It is heart breaking. The Hospice Nurses even say she is not suffering. I disagree. I know my mom in her right mind would not want to be like this. One of the nurses said we can't give her more morphine that would just kill her. This is really hard. The nurses are feeding her pureed food now and that is just enough to keep her alive. Please don't get me wrong, I love my mother very much, but I know she would not want to live like this in her right mind. I don't like this dying process, just waiting until she dies little by little.
cry
Snookiebow
UC First flare: August 2006, diagnosed September 2006

Have been in remission since 2009. Last colonoscopy completely healed. No sign that I ever had Ulcerative Colitis.
Dealing with arthritis, osteoporosis and tennis elbow right now.

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 1/24/2016 6:48 AM (GMT -7)   
Unfortunately for some older people and their loved ones, euthanasia is not allowed in most of the US. It's hard to watch someone we love slowly disappearing. I think first you must find a way to stop blaming yourself because you can't care for your mom. You've done everything you possibly could to give her a peaceful end and it's unfair to expect more from yourself. Sometimes some short-term counseling with a grief counselor can help. I think the more conflicted you are about this decision, the more difficult it will be for your mother to accept that this is where she lives now. It isn't a temporary step, and both of you need to work to accept that.

In your own mind and in your visits with your mother, try to concentrate on happy memories and good times from the past. This is where her mind is focused now, and what she will remember best. I don't recommend suggesting she stop eating and drinking. Watching a loved one starve to death is brutal, and dying that way is even more brutal. Depending on the laws in your state, sometimes it just results in a feeding tube being placed to feed the person.

There are others here who have shared your position who will be able to give you more wise counsel. Remember to love yourself.
Thyroid forum moderator

Ulcerative colitis; 10thyear of remission with Remicade. Inflammatory osteoarthritis; osteonecrosis from steroids. Grave's disease post-RAI and now on Levothyroxine. Type II diabetes induced by steroids. #ucsucks

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23549
   Posted 1/24/2016 7:48 AM (GMT -7)   
I felt like I was reading my story with my grandmother. I have been exactly where you are and it wrenches the heart. It is so very difficult to deal with. My Gma would beg me to "put her down" like a dog. I can not tell you how many times I left the assisted living center in tears.

I wish I can say it will get better but I can't. Hang in there and know we understand how you feel.
SHERRY
Moderator-Allergies/Asthma, Alzheimer's, IBS, Co-moderator-UC
Diagnosed Left sided UC '92 - meds: Apriso, Remicade) Unable to tolerate MOST mesalamines* Currently in Remission, IBS, Diverticuliar Disease, Fibro, Sacroiilitis, Raynauds, OA, PA, Rosacea, Psoriasis, Dry eye syndrome and allergies controlled by Zyrtec

Lucy777
Regular Member


Date Joined May 2016
Total Posts : 90
   Posted 7/19/2016 12:59 AM (GMT -7)   
Hi Snookie!

I'm sorry you are having to go through this! I have felt many of the things you described, with my Dad. He has been going through this journey since 2007. It has been really hard on me. I was fortunate enough that he moved to a nursing home out of state last year, near a sibling, so I am not having to live with it on a daily basis anymore.

Not long ago, my sibling was out of the country and I received a call they expected he had less than 24 hours to live. I raced to fly there so he wouldn't be alone as he died. Long story short, he ended up living and continues to.

I couldn't do the daily visits my sister does. I would leave in tears every time and found myself getting more and more upset. He is in a state of not knowing me (has been for years now), unable to talk, only able to eat or drink thickened and pureed.

It also is horrible that he hasn't been able to do anything for himself for years now. He is in a wheel chair and basically is changed routinely and fed routinely and put to bed for naps and night. It is a horrible life we would never put a pet through, but the laws in our states require he be kept alive.

I wish I could encourage you in some way, but the only true encouragement I can give is to tell you, you are not alone. It is a terrible disease...others understand your pain...hopefully, there will be a discovery of a cure soon, so the next generation will not have to go through this. God bless you and your Mom!
Depression, Anxiety, CPTSD, TBI, IBS-D, GERD, Hiatal Hernia, Fibro, HBP, Osteoarthritis, Eczema, Incest/Rape & Domestic Abuse Survivor, Recovered Eating Disorder and Cutting, Cancer survivor - 15 years

"All the world is full of suffering. It is also full of overcoming." Helen Keller

SnookieBow
Regular Member


Date Joined Mar 2007
Total Posts : 79
   Posted 7/20/2016 8:09 PM (GMT -7)   
Just an update. My mom was on hospice until April. Surprisingly she did not die. After three months of spending most of her time in bed and eating very little, her energy level came back and she spends most of her day roaming the halls of the nursing home. They took her off hospice. I go to visit once a week. This summer I noticed she would forget my name, but she was so happy I came to visit. One day I arrived in the morning for a care meeting, but I went to see her first. She said "I haven't seen you in a long time." We visited and I told her I was meeting with the head nurse and social worker. After the meeting I went back to say good bye and she said the same thing to me, "I haven't seen you in a long time. " I left to pick up the kids and returned about 3 pm and sure enough she said the same thing to me. Her dementia is so bad. She doesn't feel anything is important to remember. She lost her glasses in another residents room two months ago and when I ask her she says, "I don't wear glasses, never have." We have no idea where they are and she doesn't want them. Life is interesting, you can never really plan as it never goes the way you expect. I was planning a funeral, but guess again. My mom is still with me, not the same, but different and our new normal.
Thanks for listening.
Snookiebow
UC First flare: August 2006, diagnosed September 2006

Have been in remission since 2009. Last colonoscopy completely healed. No sign that I ever had Ulcerative Colitis.
Dealing with arthritis, osteoporosis and tennis elbow right now.

Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4774
   Posted 7/21/2016 3:52 AM (GMT -7)   
Isn't life grand.

My dad is reaching the point to where he can't feed himself.

Mom who's been in an assisted living place for two months now is overly upset that we abandoned her.

Both raise such a fuss everyday that the caregivers avoid them so they aren't getting the care they should.
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