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My mother is going downhill - asking for kind thoughts or feedback

She has a degenerative illness, but has taken a turn for the worse. I don't know how much time she has left. My dad and I have been doing everything we can for her, while making sure we can still take care of ourselves. But she is so anxious and nervous and trying to control everything, including after she's gone, and she's also making my dad anxious, and all this is just adding to my own stress and fear of losing her.

Just looking for some kind thoughts or feedback. Thanks.

bleurowz 8 Sep 2

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32 comments

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4

Contact a local Hospice care,they have seen it all,at no cost to you,my late wife was under their care,counselors know what to do in these stressful times.

Thanks. Yes, my mother was in in-home hospice. This post is from a few months back; she passed in early September. But I do have some comfort in knowing she went peacefully.

4

Just lost my mom last month—also a controlling person. Let her have as much control as possible, for her mental comfort. Try to get to the source ofnher anxiety — does she fear pain? Being alone at the end? That your dad won’t be able to manage? That he’ll find someone else? Tlaknher thru her fears so she can mentally and physically let go.

UUNJ Level 8 Sep 2, 2018

I know she's afraid of suffering. She has a living will and keeps reminding us that we'd better use it. We've reassured her we don't want her to suffer. Her need to control is hard because she becomes obsessive, and as I'm also dealing with challenges in my own life, it makes it more difficult for me.

@bleurowz Hospice may be your best option. And some Xanax for her anxiety.

4

I'm so sorry to hear your family is going through this. I work in a nursing home, and though I'm not a medical professional, I know a lot of our residents take something for anxiety. Is her doctor aware of how anxious she is at home?

dkp93 Level 7 Sep 2, 2018

She started taking an anti-anxiety drug. It's hard because she's got a very controlling nature. Hates that we are doing things for her.

@bleurowz That's a mom for ya! I hope the meds can give her a little peace.

3

First of all... I feel your pain! I just went through this with my mom. I built my current house with a bedroom for her when it was time. I didn't want my mom going into a home... So I built a spot for her here.

She didn't want to give up the freedom to come and go in her own house for the longest time. But she degenerated enough to where should could no longer handle stairs so she finally moved in... This was last August. She went in and out of the hospital and rehab 5 times until she passed away this past February.

My mom tried to control everything too. She knew we would all inherit a lot of money but worried about my middle sister blowing through all of hers. My middle sister has a brain injury she suffered 20 years ago. So she set up trusts. My only worry was that I could not fix her and in some cases struggled to even keep her comfortable. It seemed like she would only be home for a few weeks and then she'd be back in the hospital. I felt SO BAD watching her struggle and not being able to help! I mean... I could help... But not to the level I would have liked as it just wasn't possible.

In the middle of all these visits she suffered a stroke that took half her eyesight and scrambled her ability to process information. Some days she seemed normal and others not so much. So... She could no longer knit, work the crossword, read her books, etc. She was frustrated beyond description. I shared those feeling with her as best I could and tried to think of things she could still do. Mixed success there.

Then... On her last trip to the hospital... She changed. She became much more calm and, in retrospect, seemed to be planning her end. We had many conversations with her directing everything just as level-headed as you could imagine. Two days later she passed away at 3:15am in the arms of a nurse while giving her a sponge bath.

My advice to you.... Bear with it and be there for your mom! Say everything there is to say (good or bad) and ask every question you can think of. Ask the doctors for something to help with the nervousness. Morphine or Valium, most likely.

But you also need to take care of your dad... So you will be pulling a tougher double duty! I would also advise you to post out here as a stress reliever. I wish I knew of this place last year!

Good luck! My thoughts are with you!

Thanks. I'd posted this two months ago, a week before my mother passed away, which I'd posted about in some of the groups. She did go peacefully. But I still appreciate your response and your support.

3

I am glad you are there. If you can, sit with her and hold her hand and ask her what you can do. Tell her your dad will be ok. You will watch out for him and you will be ok too. You love her, tell her that. My passed 3 years ago. I was so glad I was there even though she was driving me crazy. Just be with her and we will be here for you.

3

Is she in Hospice care?It's a non cost to you service,helping those who are failing,my late wife used their services many times before her passing. A Nurse was called many times early in the morning or late at night,to help bathe her, or change her sheets.

Not yet, but it may be a possibility.

@bleurowz If you get a great nurse, wonderful program! The doctors work with the nurse to provide a peaceful transition.

3

The best and kindest thing you can do for her is let her know you are there and that you care. I'm afraid that includes sloughing off her personality quirks as best you can. I know it isn't easy (been there several times in the past few years), but that's the way it is. So, for whatever it's worth, I wish you well and remember that sometimes one needs to rant. Come here to do it and not with her.

3

Dealing with a parents declining health and death is challenging and very stressful. I have been though this with both of my parents in past years. Try to be strong as possible, as you are a very good person to be involved in their care. Make the best choices you can based on the best information you have and ignore those who would judge or make critical comments. Offer your mother love and comfort. Remember you are giving her care that no one but a child could do. Take care of yourself also, as a burned out caregiver can not offer their best. Ask for outside help as hospice is very helpful at such challenging moments.

Hospice is a possibility, but not yet.

@bleurowz I suggest you consider having hospice over for a "pre need" visit. You can learn about the many services they have to offer and they can make suggestions to help you while your mom is still in the "pre need" mode. They when the day comes that you do need them, its already been set up and there you go, getting some very good assistance in your stressful moment in life.

2

Thank her and show that she was successful
in her life and accomplishments.You value
and celebrate the uniqueness that is her
alone. Death cannot hold the upper hand;
or all we do (or did)matters not.She did change the world otherwise you wouldn't be
sharing this part in her life(hard as it is).
Death sting is we didnt matter.Share the
fear as best you can,as we all have different
thresholds of fear.We all will be where she is.
And you reflect the good she lived.We
can't fathom another's fears-just allay them.

Thanks. Although this post is about nine months old; my mother passed away last September.

2

I'm sorry you are all going through this. Wishing the best possible outcome for you all.

Thanks. Though this post was from last September; my mother passed about a week later.

2

Sorry to hear you are going through this. We went through it with my father about ten years after losing my mother very unexpectedly.

I notice you end by commenting on your stress and your fear of losing her. Fearing that loss is not serving you well. The loss is coming. Fear won't stop it. Fear will only stop you from relaxing and celebrating the time you have left with her.

Throw a party to let her know how much you, your family, and her friends love and appreciate her. She won't get to hear it at her funeral.

Find out if there is anything on her bucket list that would be practical to; if so, do it.

Get the most out of the time you have left with her. You can't do that while being afraid. The loss is coming, but it's not here yet.

2

I'm so sorry that you are going through this. Take of yourself as well as everyone else.

2

Best wishes, for your mother and for you. Keep in mind the memories and love that you have for her. It doesn't make it much easier, it just reminds you that so few truly special people come along in your life, and the time you have with them, no matter how long or short, is that thing that drives us forward. Keep yourself and your family strong.

2

I am glad you are there. If you can, sit with her and hold her hand and ask her what you can do. Tell her your dad will be ok. You will watch out for him and you will be ok too. You love her, tell her that. My passed 3 years ago. I was so glad I was there even though she was driving me crazy. Just be with her and we will be here for you.

2

It is heartbreaking to know you are loosing a loved one. I'm so sorry you have to go through this and you will get through this.

Make a little time each day to do something nice for yourself. It will help you recharge. Stay strong and try to stay calm.

Betty Level 7 Sep 2, 2018
2

Just try to enjoy what time you have left. Its so hard to watch them go downhill. Be strong.

2

I'm do sorry to hear about what you are going through. I can only imagine what it must be like. You've done your part to the best of your ability. Find ways to enjoy her company for what ever time she has left. I would think that she is doing what she is doing because she is facing something outside of her control. Just let her know she is loved and appreciated and that you will always remember her in your heart. No one wants to lose a loved one, but it is inevitable. Make the remaining time as special as possible.

2

Wish the best things can be for you and your family.

2

So sorry you’re going through this. Take care of yourself. In the evening have a cup of stress relieving tea. There are some in stores. Read labels though. Maybe mom and dad would like some too.

2

I'm sorry to hear this. I have lost both parents to different forms of cancer. So I can relate to this somewhat although in your case, it seems like it might be more painful and drawn out. With my parents, things were fairly cut and dried and it was just a matter of keeping them as comfortable as possible during their final weeks. My mom went quickly (lung cancer) once she was released to home hospice care and my siblings and their families (and mine) all traveled to Oregon to help. It took about 2 weeks and she died 2 days after her 61st BD. In my dad's case, there was more drama (it's complicated), but the short version is that he had pancreatic cancer that was diagnosed so late that his doctors felt the cure would kill him faster, so he received no treatment and we watched him more or less waste away. Similar to my mom's situation, we tried to make him as comfortable as possible. Eventually, he became largely unresponsive and lost all of his motor skills, but we believed he was still "in there." Everyone pitched in to help care for him.

It's difficult to offer advice. Without knowing more specifics, maybe humor your mom to manage the stress levels? Overall, you want to make whatever the remaining time you have with her as pleasant as possible. When she's gone, she's gone.

I know I wound up speaking more about my own experience, but I hope hearing this perspective was helpful. I'm sorry you're having to experience this.

1

UPDATE: Many thanks to everyone who's responded, including recently. I don't know why this post is showing up as current, because I actually made it almost nine months ago and my mother passed last September. It's too old to even edit to add this update, so I'm putting this here.

I'm very sorry, you have my thoughts. My mother passed 2 1/2 years ago and I'm still surprised by realizing she's gone. I visited my dad's grave 2 weeks ago (1998 ) and was surprised by the strength of my emotion. All I can say is, they live on as long as we remember them.

1

Update: Just saw your comment below. I'm sorry for the loss of your mother. I hope your last days were peaceful and satisfying for her. Sincerely, Charlotte

Thanks Charlotte. Yeah, I don't know why this post keeps showing up. People are still responding to it, even though it's about nine months old and my mother passed away last September. I will edit it to include this.

Well, it seems like it's too old to even edit. I'll post something at the top.

@bleurowz I got a notification to see it.

1

I would just enjoy her personality, however it is, during her last time with you. She will be more comfortable and happier if she is managing how she is wants life to go before and after her death. Surely you and your Dad can change what you want, after she is gone.

1

Maybe a home hospice secular counselor can help you 3 ? Are your parents religious ? If she is trying to regain control of an aging body MAYBE a swimming pool or massage or accupuncture can give her some relief and respite ?

Thanks. Although this post is about nine months old; my mother passed away last September.

@bleurowz sorry I read no date on posts

1

I’m sorry for your struggle. Self care is important—if you can, take turns with your dad, or call in a neighbor so you and your dad both have respite from caregiving for a day or two. Or the hospice may be able to refer someone to provide respite care.
Remember that you are an adult in a more powerful position that her—that’s a new dynamic for you both. Take the opportunity to set new boundaries. It’s OK to say, “Mom, I hear that you want X done now, but I need to do Y today. We can talk again about X tomorrow.” Then leave and do what you need to do.
My mom, who was also controlling, died in August. She only found peace once she sought death in her last few days in home hospice. She was disappointed each time she woke up. She reached that turning point once my sisters and I had checked everything off on her to-do list. We had been advised that at the end, it’s often unfinished business that keeps people hanging on. Like, she was nagging dad to clear away 1600 backed up emails, but his cognitive state didn’t allow that. So I did it and showed her the empty inbox. Checked that task off the list.
Try to wade thru the normal controlling behavior to see what the real “to-dos” on her list are. Then focus on those.
Best of luck to you. If you get that time off and want to meet up midway between your town and mine, let me know—I’m happy to be a compassionate listener.

UUNJ Level 8 Nov 20, 2018

Thanks. I'd posted this two months ago, a week before my mother passed away, which I'd posted about in some of the groups. She did go peacefully. But I still appreciate your response and your support.

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