Health Changes

Saya_G

So my LOs health is changing.

She has bad knees, which make it hard for her to stand. She is losing strength too. 

She’s been in assisted living since last December, I’ve brought her home a few times since she moved into the facility - for family get together or cook outs. She uses a transport wheelchair while at my house. I help her get in and out of the main doors, and often help her move from room to room. This past time she was dead weight. I had to have help. I knew after her visit it would most likely be her last, I just don’t have the strength to lift her.

She naps often, her head droops a lot. Her feet are swelling. 

Hospice called today, asked if she had kidney issues - she does. Kidney failure stage 3b. She has heart issues too, chronic afib, pacemaker, congestive heart disease. 

She’s 86. Hospice put her on lasix to help with with the edema. Sadly they can’t put her on potassium because of her kidney issues.

Mom is at stage 7a with dementia. 

Hospice  nurse said her health is failing her. 

I ask if moving her into assisted living had cause the changes - she never wanted to go to one! The nurse assured me that no matter where she was living the issues she has now would be the same. That gave me some comfort.

I asked how long she thought we have. The nurse was reluctant to answer. She said no one can really say, but then said that she could take a turn next week or next month. I asked, what about next year? She said, I honestly don’t think your mother will make it to next year.

She has a DNR. All of her health issues are major, so we’re not planning on any significant life extending procedures. I don’t think she’d want that.

I feel that there is something I need to do. Maybe not. 

For those of you that have gone thru this to the end, was there something you wish you had done or been aware of when your LO was failing?

Saya

loveskitties

You indicate that your LO is in an assisted living facility and on hospice.  

Has anyone suggested that perhaps she needs to now be in a skilled nursing environment? 

Sounds like her medical needs and declining health and abilities she is no longer a fit for assisted living even with hospice, since neither provides constant daily nursing care that I know of.

M1

Saya, I would just caution that lasix is very hard on people sometimes, it causes such urinary urgency that people can fall while struggling to get to the toilet. That is, if she's continent still. Is the edema bothering her? The treatment may be worse than the disease...

Jo C.

At this point in time, I would question being in an "Assisted Living" setting and would want to ensure 24 hour care needs and support are being met and all comfort measures being consistently taken.

I would also want to also ensure that unnecessary meds be discontinued and then would move forward to be with my LO when I can and to express my love, show affection and caring, and to assess any changes in said needs whether physical, emotional or comfort wise on an ongoiing basis. 

At this stage, comfort care and our love is what we can strive to gift to our LO and it is not easy; I learned this the hard way and so wish I had risen to the needs better than I did.  Back then I did what I did based on what I knew at that time - now that I am more knowledgable and know much better on all levels , I can do much better.

J.

Saya_G

Thanks for you replies.

She is in a skilled nursing facility. 

I’m confused as to why I would asked to cut her meds. Also, she has edema, won’t lasix help? I don’t think they plan to keep her on them any longer than needed.

I will talk to my hospice nurse.

Saya

LicketyGlitz

Hey Saya, I'm sorry that you guys are at this stage. For me it was confusing, and I continually second guessed myself - "Are we doing the right thing? Did we do something to hasten Mom's death? Should we try and treat this, try and treat that, or just keep her comfortable and let nature take it's course?"

It kinda sounds like that's where you are at too? If so, I understand.

My sister and I found such comfort in our hospice folks, when we were unsure we questioned them on all options, and they never told us what to do (which was both a blessing and a curse when you're in the strange new world of imminent death), but they gave good counsel and helped us recognize the signs that things were coming to a close (cold hands and feet, no longer able to drink/eat because sustenance is now going to the lungs instead of the stomach).

And for us, when Mom started her final decline it happened fast. We kept saying "But a week ago she was walking!" It was a hard thing to wrap our brains around even though you've known for years that this is the end of the journey. But then she also plateaued for a few days before the last three days of her life, and that was its own special hell - not able to move forward and on to her next adventure with no chance of coming back to her current one.

It sounds like your mom still has some time ahead of her? I would utilize the counsel of your hospice people, and doctors and nurses, ask all your questions and make the best decisions that you can, and give yourself a break if you fear they are all wrong. I certainly wasn't sure of what I was doing, but a year after my mom passed away, I have no regrets and know that she now knows my sister and I did the absolute best we could.

My best to you and your mom to find peace, love, and comfort in each other.

Stuck in the middle

Saya, I think you are doing the best you can do.  I'm not a doctor, I just know what happened to my parents and in-laws.

My FIL had the heart disease/kidney disease combination, with treatment of one organ damaging the other, and he couldn't survive it.  When my mother was at Stage 7 with dementia, she was slipping away and all I could do was hold her arthritic hands very gently and share the warmth from my hands.  My father had cancers and some pretty painful treatment, and he was ready to go.  His favorite poem, Crossing the Bar, was read at his funeral.  

Your mother is crossing the bar.  All you can do is thank God for hospice and let her go.

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May flowers

Saya, I don’t have much to add, just that it sounds like you are doing all the right things to make her comfortable. Spending time with her is probably the best thing, like Victoria said, play her favorite music, talk to her, hold her hands, reassure. I used to rub my MIL’s hands, feet and legs with lotion, and brushed her hair, and that seemed calming to her all the way to the end. It relaxes my FIL too.