Hospice roller coaster ride.

Started by

I've been caregiver for my mother-in-law for 6 years now. She has many health problems, and has wanted to die for a couple of years now. Well, she is finally on hospice, and I know this will sound terrible - but I'm so tired of the rollercoaster ride! They keep telling us she is showing signs that she's close to dying and she's barely moving/talking, etc., but then a couple of days later, she's perked back up and talking, drinking and eating. Then she starts declining and it starts all over again. I know only God knows when we die, but this slow death is so sad and frustrating! And needless to also say it's also frustrating to see her grandkids that she raised and hardly never visited her are showing up and acting all sad and caring about her now. UGH! Anybody got any suggestions as to what helps to keep you from going nuts?


We probably all go a little nuts in that situation. At least we know it is temporary.

Hospice can definitely be a roller coaster ride! All we can do is take each day as it comes and provide love and comfort. Don't fret too much over her grandkids. You take care of your actions and let them do their thing. If it helps you to feel less frustrated, give them the benefit of the doubt and hope they have come to the belated realization that they should honor this woman.
so sorry for your suitation so true only God knows when our time is, and yes I know the relatives come out of the wordwork, I just would send them away and say hey you didn't care when she was doing well, don't act like you care know, that was the way it was when my stepdad died, now my mom lives with me with dementia among other diseases and when I have to go through what you are now, anyone who has not been in touch all these years will not get the opportunity at that time as I am poa and mpoa and I make those decisions. It is hard not to go crazy, I am also going through a divorce, I say good riddens, you only get one mom and dad, men come and go, I take 6 mg of xanax a day to help keep me calm and a little respite care 6 hours a month to be able to take a nap, Will keep you in my prayers and know that you are not alone, God Bless
I, too, am in a very similar situation with my father-in-law and that is an excellent description of the hospice exp.
Just a day ago, the doctor decided to put him on steroids for inflamation ( final stage copd ) as well as some cough syrup. Meanwhile, they are telling me not much longer or it's hard to tell how he will actually pass.
Hospice has been a godsend, esp., the aid that bathes him.
He had a very good day yesterday, very little coughing and hacking, and then out of the blue, he tells the meds. are " messing with my feelings". So, trying to have a genuine conversation with him is impossible. Me, calmly telling him that it is normal to feel depressed and anxious. That conversation went no where.
Got the nurse to speak to him on the phone......long story short, off the cough syrup.
The entire time he has been on hospice, he has battled with me and the nurses about his medication; either not taking them at all, or taking too many, or not taking enough......just depends on the drug.
The thing that I have learned throughout the last two and a half years, is just because someone gets a life limiting disease, does not mean that person will change. Some people do explore old wounds and make up, or have good and true conversations about the experience, but not everyone. And, until an individual can face reality and actually experience their feelings, there are no meaningful and loving times at the end.
I feel sorry for my husband and his dad, that they could not discuss issues that were pretty bad years ago.
Denial is where they are at, and there is not a thing I can do about it.
No one comes to visit my fil either. Not his daughters, grandkids. I don't get it, other than he was not a good parent and never got close with his grandchildren. It's all too sad.
I just try to take one day at a time and ignore a lot of wht my fil says, because most of it repitition of the weather or him yelling and micro manage everything I do.
Each end of life situation is unique, but I assure you that your feelings are normal. You may feel alone, afraid, frustrated, and angry with yourself, your family, hospice staff, even perfect strangers). Anger often stems from loss and appears when your life seems out of control. You may even feel guilty for wanting death to come, and for the roller coaster ride to be over. But consider that this could be a sign that you have accepted the inevitable end. The roll you play at the end of life is just as at the start of life. It is worth the pain of heart and exhaustive work to see your loved one through with dignity and honor. There are some great, practical, suggestions from the American Hospice Foundation. Look them up, you'll find ideas for dealing with your feelings, your family, your sanity and health, and where to find much needed support. My heart goes out to you and the good that you are doing.
Your MIL is probably on too many prescriptions to begin with thus the reason for her health problems. She might heal and get better if you wean her off of those prescription poisons and give her some nutritional supplements instead. Hospice's function is to facilitate death. It doesn't look like your MIL is ready for that IMO.
"konacaregiver" - hospice professionals may be offended by the statement that the function of hospice is to "facilitate death." Hospice's purpose is to alleviate suffering. Hospice care is often put off because there is this false belief that they are "the grim reaper." In fact, what "vw9729" is experiencing with her MIL is not uncommon. Once pain has become manageable and non-palliative drugs have been discontinued, patients often 'perk up' and become more lucid and more 'alive'.
Hospice focuses on the quality of a patient's days, rather than the number of their days.
You are doing a good job. Keep breathing, praying eating and sleeping (when you get the time . . . . along with ALL the other stuff involved in helping another person to pass on and to keep your own life from not falling apart. All these fine folks in this string have addressed the hospice part of this so I wont repeat. I just wanted to say try and go a little easy on the grand kids. People are all works in progress. They may be JUST starting to realize that they aren't invincible and that the people who always had THEIR backs aren't always going to be around. It can be a good time for them to turn to God as well. God will always have their backs which will help them grow stronger through this time. You want them to be able to do one day what YOU have been doing all this time. Keep breathing in and out — God bless you
Kona - your comments are entirely off-base for what hospice is. Hospice does not "facilitate death", hospice is all about providing comfort and palliative care at the end stages of live for those with a terminal disease.

VW - For many of us, death is visualized by what we have seen in the media. The drama of the massive heart attack and they keel over dead; the gunshot dead and the pool of blood. Just think of all the TV series that start off with the dead body. But the reality of death from is far from that. It is a long march with period of rally's but it eventually comes. For my MIL, she went into a free-standing hospice facility from a hospital discharge (after about a weeks stay). She had been in a NH prior and had been on hospice at the NH but she was then what I like to call the "Bataan Death March Hospice Style" - just a long slow decline with cognitive peaks now & then. Most of the others at the free-standing hospice facility (had been a hospital) were cancer patients and looked very, very bad. Visually you just knew they were close to death. But the end stage dementia patients still look just so good, so it's hard to realize that they too are close to death. It's not easy. I'm assuming that your MIL is still @ home and that is where she is on hospice? If so, you might speak with her hospice group to see if she could go to a facility based hospice for her end stage care - if you have them in your area. My mom is in a NH and not on hospice but when the day comes for that level of care, she has signed off on which hopsice group to be affliated with (VITAS). VITAS was chosen because they have a facility in her city and for us this makes the most sense for our approach to her care plan. Again none of this is easy and you are doing the best you can.
My mom is on hospice too I know what you mean don't know how many times we thought this was it then she gets better and the cycle starts again now hospice put her on Ativan all she does is sleep when she awake she's confused and scared and screaming she has dementia and chronic uti so I know about the roller coaster ride take care of yourself
Just lost my Dad six months ago and Hospice was a God sent, they walked us thru the steps when we had questions they sat with us told us what was going on and made the days easier. I understand what you said about family as we also had people come that has not seen him in years but they helped in the end by being by his side as we got much needed rest. They also have to deal with the fact that they did not see him as much but no one really expects their love one to go so quickly in there eyes there was always time. I know you hear this all the time but ask the Lord for his Grace.

Keep the conversation going (or start a new one)

Please enter your Comment

Ask a Question

Reach thousands of elder care experts and family caregivers
Get answers in 10 minutes or less
Receive personalized caregiving advice and support