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MaryBee Asked March 2021

At home on hospice, my mother-in-law is declining both physically and cognitively. How to steel yourself for dealing with the decline?

Eight weeks ago my mother in law was walking, albeit precariously, with her walker. She had several falls and worried us to death by getting up on her own. She got a hospital bed through hospice and now she is confined to bed, except when we help her up to the recliner. She cannot get up on her own anymore. She is confused most of the time now, and I can deal with that when she is content, but being confused and distressed is definitely the hard part. Yesterday she was crying out, Help me! I need to get out of here! I’m dying. I’m so afraid!


We prayed together, as I strongly desire for her to be comforted in her fears and she is also a praying person. But we also went with medication to help calm down the outburst. So then she was just sleepy. This situation can be depressing. I’m sure there are others out there experiencing similar things. This is not so much a question as it is reaching out for moral support.

Taarna Mar 2021
Letting go of a loved one is hard work. Most people have ambivalence during this transition period. Most people are fine with alleviating pain for the one leaving. However, knowing that they are leaving can stir up a lot of memories of pain over old disagreements. Try to find a way to find peace over the past and live in the moment. Also, encourage others to visit so they can reach peace in their relationship with your MIL. Many people who are dying feel there is "life work" that needs completing. Some need to see all their loved ones before they die to say good bye, Some need to know that pets and/or personal affairs will be taken care of. Some need a version of last rites - ask your loved one's faith leader to visit and fulfill this obligation. Some pass when the family is gathered and others prefer to pass when they are alone in the room., Your MIL appears to be the type who needs companionship, As an RN, I have witnessed many people pass from life. Help your MIL to complete any "life work" so she can pass with peace.

Since she is a praying person, I have a couple of suggestions:

1 - Read the Bible to her. I like the gospel of Luke since this gospel had Jesus talking to so many different types of people, including a lot of women.

2 - Read or watch the movie "Heaven Is For Real." It is about a little boy who died for several minutes on an operating table and came back with amazing stories about heaven and the people he met in heaven. It may help your MIL - and the family - to feel more comfortable about dying if she knows what can await her.

3 - Ask her what she is afraid of. Praying is fantastic help, but dealing with fear may be what is needed to relieve the distress. If she feels she is not going to heaven, ask her to talk with Jesus about this and to accept His offer of help. If you are not comfortable talking about this, ask a pastor from a Bible-based church to talk to her about this.

4 - Anti-anxiety medication can help her to relax but will tend to make her sleepy. Near the end of life, most people tend to sleep most of the day. Hospice staff can advise you to make sure she has very little pain or discomfort.

5 - For yourself and any other friends/family that are having distress about her dying process - join a grief group. I like GriefShare since it is full of others who are processing the loss of loved ones. They can offer the best advice on ways to cope.

funkygrandma59 Mar 2021
My husband was under in home hospice care for the last 22 months of his life. He also was completely bedridden. If not for the grace of God to get me through those months, and many years before, I don't know what I would have done. Not to scare you, but be prepared for a rollercoaster ride like you've never been on before. Some days will be good, and then some days will be bad, and some even really bad. It's incredibly hard to watch someone we love decline more and more each day. My heart goes out to you for sure. I'm glad to hear that you and your MIL, have your faith to lean on, as you will need that now more than you ever had before. You can do this, God will give you the strength, but just know that it won't be easy. But know this too, when it is all said and done, you will be a much stronger and more compassionate person than when this journey started. May God bless you and keep you.
MaryBee Mar 2021
Your honest answer is sobering fg59, but I do appreciate your honesty. Before my MIL got so confused, she said to me more than once, Wouldn't it be nice to go to sleep and just not wake up? I have hoped for her to get her wish, but I wonder how many people do? It seems to me, not so many.

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Daughterof1930 Mar 2021
My dad went from walking with his rollator, a very slow, shuffling walk, but still mostly independent and mentally sound for sure, to home hospice, to dying within less than two months. It was awful to watch for sure, but he was very tired of his health struggles and ready to go. It was only in the last week that we used the meds of hospice. I’d talked long and hard with the hospice nurse about the reputation of hospice hastening death. She was a huge comfort and help and gave me explanations that made complete sense. My dad would ask me “how much longer?” with such a pleading look in his eyes, it was hard to take. He so wanted to die in his sleep at his home. Ultimately he got his wish as his last day he was just sleeping. I’m truly sorry you’re going through this, it’s such a rollercoaster, taxing both physically and mentally. I consider it an honor to have been there, it was the hardest experience and also a privilege to see him out of this world the way he wanted. Rest anytime you can, walk outside, and know you’re doing better than you think. I wish you both peace
NeedHelpWithMom Mar 2021
You were a blessing to your father.

I adored my father. Thanks so much for sharing your experiences with your dad.

I think my dad knew during his final hospital stay, that he wouldn’t be returning home. He died in the hospital.
Midkid58 Mar 2021
We kept daddy very calm all the time. Hospice was wonderful. They taught those of us who care for him how to beat the anxiety/pain before it began, and how to talk to and be with dad so he didn't feel minimized.

I'd spoon feed him, sometimes he'd puke all over me. I'd just laugh and say "Betcha I puked on YOU a lot when I was a kid"...making a yucky situation better. I rubbed his legs and back. Kept him calm and watched RoadRunner cartoons. When he had his lucid moments I reveled in those.

As he declined, he was asleep more and more (and it was not due to increasing the morphine, it was his body shutting down). We were quiet when he was quiet, talkative when wanted that. He had me sing to him, sometimes, for hours.

I have THE sweetest memories of being a part of ushering him into the next life. It was beautiful and sweet.

I realize that not everyone gets the passing that they'd choose, but for dad, by understanding what he wanted and needed and being calm and patient FOR him, helped him tremendously.

For me, b/c I am a woman of faith, dad's death was a glimpse into eternity. I KNOW his mom and sister came to 'get him'. What a sweet blessing.
cweissp Mar 2021
What a beautiful testament of helping a LO to leave on their own terms.
cxmoody Mar 2021
I am sorry that you are all facing this.

I’m also glad that you could pray together and have that comfort.

May God continue to guide you.
MaryBee Mar 2021
I appreciate that CXM.
WendyElaine Mar 2021
I am so sorry for her and your distress. It is wonderful you can be there to comfort her.

If you have not already done so, have her checked for a uti. This could be the source of added confusion. It was for my mom.

Sending you both a hug.

Katsue Mar 2021
Im so sorry you are going through this my sweet mom passed 2 months ago She had dementia horrible disease My dad had stroke in October which put my mom in a rapid decline (married 72 years). We had to put her on hospice to control her meds. My mom would scream out in pain saying she’s so sick and dieing saddest thing in my life. She was put on morphine and I believe that took her life. I feel guilt that we put her on that. My mom is a Christian women she would scream out to Jesus. Just sad. If you can maybe hospice can come in. They are a big help. Medication does help in this situation it’s just whether you want to do this. My mom was 92 and I know she wouldn’t want to live the way she was. Trust in God asks him for direction Pray pray I feel for you it’s very hard. I love this site, it did help me through this. You take care of yourself too! Please keep us all updated Take care ❤️
Daughterof1930 Mar 2021
I’m sorry for your loss. Please rest assured that morphine didn’t take your mother’s life. I walked through in home hospice with my dad last summer and saw clearly that the morphine provided wasn’t what caused his death. It helped him and provided a way out of pain and shortness of breath
bevthegreat Mar 2021
First, let me tell you that the Hospital bed Hodpice provided for my Dad was sooooo uncomfortable, try it yourself and you'll know what I mean.
I even put a gel pad on top to try to help it be more comfortable.
I ended up letting him sleep in a regular bed for awhile then bought him a new automatic recliner and he liked it so much, he even sleeps in it.
The only times he's not in it is when he gets his sponge baths, Cathiter changed, goes to the bathroom, eats at the kitchen table.
He's happy to be around people.
He doesn't like being by himself.
He's not on any med's at all and he has dementia and has short term memory loss, can't remember 5 or 19 minutes.
When he is awake, he is constantly saying What Do I Do Now?
other prases I'm hungry, I want a snack, I have to go to the bathroom, I'm tired and just want to close my eyes and rest.
Yes it can be very annoying to have to hear him non stop while he's awake but at 96 he sleeps on and off all day.
I wouldn't give meds unless the person is in pain as they can trigger all kinds of things including depression and suicidal thoughts plus keeping you groggy all the time which can make you paranoid and it can be scary.

I find it best to let them do whatever they want as long as it isn't hurting themself or someone else.

At this age I feel they deserve it.

My Dad eats whatever he wants as it's nonsense to have him on some kind of strict diet at his age.

If my Dad wants a snack every couple hrs he gets one

If he wants to watch TV at midnight he watches it.

Try Playing music for your loved one, it can be very soothing and good therapy.

Also, my Dad loves his feet massages, puts him right to sleep.

Juse remember it might be annoying to hear what do I do now repeatedly but I try to just think of it as when you were a little kid and was always asking What's This, Why, When are we going to get there, I'm bored, What can I do, ect

If you're going to have someone on meds, they might as well be in a Nursing Home because that's exactly what is done there so they are less trouble and bothersome.

I know it is bothersome but find ways to entertain them and remember, they won't be here much longer and when their time on earth is up, you won't have any regrets.

Do unto your loved one as you would want your lived one doing unto you.

Prayers

RedVanAnnie Mar 2021
Take advantage of whatever medications calm your MIL's agitation and deal with each day as it comes. Don't torture yourself by fretting over what is lost or about how your MIL is declining. Focus on what needs to be done for her care and safety and be thankful when medication calms her. Being sleepy is fine. Even if she were not medicated for outbursts, she will sleep more and more as she declines. When she is asleep, you can still reassure her that you are there and that you love her.

Grandma1954 Mar 2021
Have you asked for a visit by the Hospice Chaplain? It might be of comfort to MIL
It is or can be distressing particularly if your loved on can not express their fears or concerns.
The anti anxiety medication does help and take the edge off. And as a side bonus when MIL has less anxiety or stress it makes her caregivers less anxious as well.
She needs comfort and reassurance. Hold her hand tell her she is safe.
RedVanAnnie Mar 2021
Good point about care givers being less anxious when LO is less anxious.

And "hold her hand and tell her she is safe" is dear advice. You always have a such good perspective on our difficulties. Thank you for wise and calming advice.
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