Need advice(24)

Saya_G

I HAD to place my mother in assisted living early last December - her needs are now more than I can take on, I have others that I am responsible for and she needs 24/7 care - besides the issue of having to lift her with my bad back (she is incontinent and can't walk - originally due to a severly bad knee and hip, now I wonder if later stage dementia is also and issue with her ability to walk).  

The facility is not the best, but due to her elopement issues transferring her right now is impossible. That said, she never wanted to go to assisted living, so her accepting her placement - even in the altered state that dementia puts them in - is not going to happen. She's calm enough now (due to increased medications), but still says that she is going home tomorrow and things like that. (I do not *think* the increased meds are an issue, she’s been on them for several months - but without them she becomes very aggressive.)

She is on medicaid and hospice. She has heart issues (pacemaker, chronic afib), kidney issues (stage 3b - last time tested), and the afore mentioned leg issues (long term issue for her). She recently had a UTI, they've medicated her for the UTI and it is better - and *may be* gone! They say that her urine looks better. Hospice doesn't pay for testing for UTIs, so we are waiting to see if she really is better. The medication they gave her is strong and they believed it should do the job. 

Problem is that, even before she had the UTI I had noticed an increase in her dementia progression. She now slumps, and often speaks in 'word salad' - I can tell she is trying to tell us a story, but nothing she says makes any sense. If I say "I love you" she immediately says "I love you too" clear as a bell. I asked her how she feels, she says I feel fine - so apparently no pain issues. 

Our hospice nurse says she is at the beginning of stage 7 - she called it 7a. She said that some progress quickly at this stage, others more slowly. She also said that she’s noticed shortness of breath, which is most likely a heart issue. But the if we want to be more progressive with her care, she'll need to go off of hospice.

I KNOW that she would not want us to prolong her life, if she truly has no quality of life. All we would be doing is prolonging her mental suffering, while trying to improve her body’s functionality (for her being in a wheelchair is hard enough - she has always been a 'go get her' type person). 

Problem is that it is so hard to know what direction to go. Does she still have ‘life’ to live? I mean, how do we know what ‘will to live’ she still has? I would not want to lessen one minute of the life she wants to live! She has a DNR, that she signed while still aware - I know she does NOT want a life that has no quality - but how do we know when it is time to let nature take its course? I do not think she is going to pass soon, so do we treat her physical needs, only to extend her life for the later stages of this terrible disease?

One of my other sibling is coming for a visit in a few weeks. If things are not better, we will need to decide whether we want to be more aggressive with our mother's physical care needs (I have two other sibling that will help with that decision - but they will have to do so long distance). 

Do any of you have any suggestions or experiences with being at this point of this terrible disease? What are the pros and cons of taking her off of hospice? Honestly the facility she is at is not all that good. Hospice has been our saving grace for her treatment, I've always trusted them - don't trust the facility to take over her care 100%, but I CAN'T bring her home and neither can any of my other sibling. None of us are set up to give her the care she needs.

It is so hard to know what to do!

loveskitties

You indicate LO is in assisted living.  You also mention that elopement is an issue.  Sounds like Memory Care is the next step.  Since she is already on Hospice perhaps they can recommend where to place her.

You would not be lessening her number of days by making this change.  She would receive more care, especially with Hospice already on board.

It may be with her other medical issues, she might need skilled nursing instead of memory care.  Again, Hospice should be able to help with determining setting required.

It is not easy having to make these decisions.  We placed my dad in MC only after he was hospitalized for heart issue.  We were fortunate to have found a good place with excellent care givers near where I live.

Wishing you and your LO an easy transition.

mommyandme (m&m)

I understand your questioning the decisions we make.  This waiting for deaths imminence is daunting.  “Should I stay or should I go”…  rings in my head… 

We had an appointment with the neurologist yesterday.  The doctor wants a blood test only to check on kidney function to see if we should back off of a med mom takes.  Since getting said blood test could be difficult,  maybe it doesn’t really matter.  If her kidneys are failing do we care?  What horrible conversations we must have.  Is mom comfortable?…yes… so that’s what we care about, especially being on hospice.  

If my mom got cancer now we wouldn’t treat it.  She has signs of some happiness in her life but it’s going to get worse.  I’m wishing for a quick death instead of months/years of drooling and a sagging head.  I’m already changing her diapers and just waiting for the bed bound stage.  She has no idea shes pooped and is sitting in it.  It feels disgusting when I wish for the end, yet I do at times.  

Yuck just yuck… I’m so sorry! 

May flowers

I can relate to this completely. Based on my FIL’s written end of life wishes (when he was cognizant), DH and I have discussed things we would treat and things we wouldn’t. Anyway, we have  determined that would not treat major heart issues, stroke, kidney failure, artificial ventilation or feeding, or cancer. But we would treat things that are relatively minor that would give  comfort like wound care, UTIs, oxygen and supplements for Covid or pneumonia, thickener for liquids, allergy meds, lotion for dry skin, constipation relief, anxiety, pull an abscess tooth and even certain broken bones for pain relief. If he had a pacemaker we wouldn’t disable it, but we might not renew the batteries, for example. 

There are small things that I treat like toenail fungus that probably seem ridiculous in the big scheme of things, but for me it’s just something I do for his dignity, like shaving or cutting his nails.

Where it gets hard is to choose one option with one side effect compared to another option with a different side effect. Right now my FIL needs a medicine to help him pee, but the downside is it is causing dangerously low BP. The alternative is ongoing UTIs, potential sepsis and worse. So it is a matter of choosing the lesser of the two evils. Those decisions are difficult.

Quilting brings calm

My mom has mild dementia. We are nowhere near stage 7.  She is well aware of her cognitive deficiencies and is miserable.  She made it very plain to the doctor at her last wellness visit that she wants no heroics to keep her alive.  No ventilator, no feeding tube and do not resuscitate even if they can completely fix whatever the issue is.  She was adamant.  The doctor had a much harder time with it than either my stepdad or I. I may find it hard when the time comes.  

Her grandfather and mom both lived until their late 90s.  Both had no quality of life  their last decade or longer. My grandma  had moderate and then severe dementia the last several years My mom  wants to go long before she gets to stage 6, let alone stage 7.  She is 84.   She’s in good physical health other than back and nerve pain and uses a walker. 

I’m going to do what Mayflower writes.  Comfort care, pain and breathing easement.  But I’m not going to ask for treatment of  any cancer, kidney or heart disease for her because it will only prolong her misery. Also because she won’t understand or tolerate the treatments. My stepdad may or may not respect that ( I am her medical POA).  He’s having an intake appointment for his own mental and cognitive issues tomorrow. 

harshedbuzz

These are hard and very individual decisions to make. 

I found the books "Being Mortal" and "Hard Choices for Loving People" very useful for working through this. Having a DNR should give you some sense of her views.

With dad, we moved to a more palliative model of care in the last year of his life. While we did treat his recurrence of prostate cancer-- which was a twice-yearly short of hormone blocking medication-- it was more to prevent pain or a bone break that would have worsened his quality of life. 

In your shoes, I would ask about giving oxygen to keep her breathing comfortably.

​fesk

Everyone has given you good feedback on the very difficult decisions you (and we all) are facing - I do not have anything to add. I just wanted to say the slump and word salad you mention may be a side effect of the medicine she is on for her aggression. It may be progression of the disease, but it very well may be the medicine. I have seen this firsthand. Unfortunately, this will present you with another decision to make.

dayn2nite2

She's in the last stage of what is already a terminal illness.  I certainly wouldn't take her off hospice for any reason and if I were to treat any infection, I would only treat with oral antibiotics.  If that didn't work, then she would succumb to infection.

My mother had a probable heart attack.  She was on hospice.  I did not remove her from hospice to test, diagnose, treat, nothing.  I wanted the rest of her life to be comfortable and it was.  She lived an additional 3 days (in a coma) and I was okay with the way she died.

[Deleted User]

The user and all related content has been deleted.

Saya_G

Thank you all for your replies! This message board is truly a blessing - because of the wonderful supportive people that are members! 

I was talking to my husband about these very issues and concerns that I have for my mother, I told him that even with a DNR nothing is cut and dry when it comes to dementia and knowing what to do! That said, it does make it a bit easier knowing that Mom doesn't want to linger.

I worry that she still has enough awareness to fight for better medical care - she still has good days - albeit not as often as she used to. I just want to do right by her. But I do not want her to suffer! But I don't want to be the cause of her loosing one minute of the 'life' she still has. ('Life' being having awareness and time with her loved ones.)

It was suggested that perhaps it is the meds she is on that help keep her aggression at bay that could be causing the droopy head and word salad. I guess that could be true - but she becomes so aggressive that without them, they want to put her in a psych ward. That would truly kill her. My brother had mental illness - his treatment was not the best - and they blamed her for his issues. He was schizophrenic - not caused by someone's mother - but at the time (1970s and 80s), some doctors believed it was! He ultimately committed suicide. She built a wall to any counseling or professional mental health services after his death (who would blame her?). She may have dementia - but those beliefs and emotions are pretty engrained. (Again, maybe at this point she is past those recollection, but again, I just don't know.)

On another side of these issues is that I wonder if she is in pain. Do those in late stage know how to communicate pain? Even a moan would be helpful! Or do I believe her when she says she is not in pain. She did tell me that her stomach ached when her UTI was first discovered. So maybe when she says she is not in pain I should accept that as true. Do any of you know? Do they get to the point that they don't feel pain? I'm guessing they do feel physical pain, but do they loose the ability to communicate their pain. How do we know??

Then I have to question my motives, am I all tied up with these issues because of my needs more than her's? Watching a parent die a slow death is hell.

I've heard that towards the end they stop talking, they stay in bed, the just shut down. She is not doing that (completely). As I said she has bad days; but do the good days ever stop?!! If they do, do I fight for more complete health care until they stop! Or do some folks have good days until the end? 

For all that I've read on this disease - I still feel like I know nothing about what to expect! Or how to handle it!

Saya_G

jfkoc

A DNR is very specific. I did not know that but it was explained throughly including the very possible harmful results of CPR. This is a good read:

https://www.verywellhealth.com/hands-off-do-not-resuscitate-1132382 Here is another good read about Hospice and its' role in medical care. https://www.medicinenet.com/hospice_care/definition.htm

mommyandme (m&m)

I believe if they can’t verbalize their pain there are physical cues like furrowed brow, clamped teeth, frowns, rigidity of limbs, hands and/ or feet can also be a sign. If they seem comfortable and relaxed awake or sleeping they probably are.   My mother doesn’t tell me she’s hungry but I can see to ask by her facial expressions or “mood”.

Hope for some peace for you and yours soon.