Is there a time when you KNEW quality of life was really gone?

M1

I'm having this sense that we're there, but it's so hard to judge when you're in it everyday.

My partner can still handle dressing and bathing and toileting, and she loves our dog and cats. But she's in pain frequently, confused or upset more and more, sleeps more and more, not interested in food, is forgetting even close friends, and perseverates about the death of her dear sister in early December despite antidepressants. No executive function left.  Took her for extensive dental work on Thursday and it was clearly too much, won't do that again and would even hesitate on routine cleanings unless she was in pain.  I just get the sense that it's time for just palliative stuff. Not hospice yet, but just trying to take things easy and make things easy and aim for comfort only.  I don't think she's happy to be here any more. Does that make sense? But how do you judge quality of life for someone else? Do I go by who she used to be? And I don't know if it changes anything from a practical standpoint. But there's been a shift. The grief is bad tonight.

Quilting brings calm

Hugs M1.  You are usually the  one proving support and guidance for the rest of us. 

My LO is already wishing for her death and she’s not as far along as your LO. She can’t do the hobbies she enjoys( crocheting and reading etc).  Can’t follow the directions or the plots.  Feels uncomfortable doing activities at the ASL that involve following what’s going on. Restrictions are lifted so they can go out and about- but not really anything to do other than go to a restaurant or the grocery store. They don’t have much physical stamina either. 

I think calling in experts to determine status is a good idea.  I hope you get some guidance. 

M1

Not 20 minutes after posting this she tripped on the front porch letting the dog out and hit her forehead hard on the stone floor. We're an hour from the nearest ER and she doesn't want to go in a rainstorm. Doing Neuro checks every hour but I bet we need a head CT .....though what would we do with the results if we're just going to palliate?!?

harshedbuzz

M1-

I am so sorry. What a difficult situation for you both. 

I don't know what the right answer is. I know my pre-dementia dad would have been appalled by the person dementia had turned him into. And I know he struggled mightily in the early middle stages before anosognosia kicked in, but there was a brief time in the late middle stage when he seemed OK in the moment.

Recognizing that he was terminally ill, my mother made the choice to treat him more palliatively. His gerontologist tweaked his medications in the last 6 months of his life stopping those that had caused him unpleasant side effects like Metformin and his statin. This was something we talked about in the local IRL support group. Most of the caregiver spouses and adult children stopped routine diagnostic screenings and invasive procedures at a certain point. Two of them had a LO with cancer which they chose to not treat around stage 6. 

HB

Battlebuddy

M1

   So sorry you are going through this. So sad to hear she tripped. It certainly sounds like maybe there is some sort of change. 

  If it makes you feel any better I am right there with you. All the issues you mentioned including grieving over a lost loved one. 

  I always thought my husband had a very high quality of life but I see it slipping down. Mostly because of his agitation, sorrow, restlessness, and a little paranoia thrown in. We took a beautiful scenic drive yesterday, enjoying nature. And honestly he was miserable the whole time. He kept talking about how people were looking at him. ( we were in a nature preserve) 

   So I too am worried because if you cant relax and enjoy a scenic nature preserve with the only sound being the chirping of birds, how are you going to navigate Target? I think his only pleasure is becoming food. 

   I am going to talk to his Nuero about some drug support. He needs something, 

  But I agree with you that it is time  for a more Palliative approach. I am sure about that and more sure every month. He has had his last dental appointment, trip to the hospital, and testing ( except for UTIs 

June45

M1 wrote:

Not 20 minutes after posting this she tripped on the front porch letting the dog out and hit her forehead hard on the stone floor. We're an hour from the nearest ER and she doesn't want to go in a rainstorm. Doing Neuro checks every hour but I bet we need a head CT .....though what would we do with the results if we're just going to palliate?!?

Oh my, M1, how is your partner?  The quality of the caregiver's life isn't great either!

zauberflote

Oh M1, I am sorry-- about the whole situation (mess...). I haven't yet picked up what age bracket you an DW are in and my only experience is with parents, so nothing I say may be applicable! 

I think you hit the nail on the head with "what would we do with the results?"  That drove our decision making for both MIL and my mom. MIL was on hospice for (pretty sure) COPD, but her breathing treatments were paid for by hospice for the whole 18 months until those last few days, when there were morphine and ativan. She died at 93. Hospice recommended twice that we go off hospice to be in hospital for a nasty cellulitis. She had pretty severe PAD from 75 years of smoking. 

Mom had been on hospice only a month before her hip sheared and she fell. Hospice had a mobile xray unit which discovered nothing, but she was in quite a bit of pain. We and hospice decided on the ER for better images. After the images showed the femur neck sheared and by then significantly displaced, we had some hard thinking to do. Hospice was right there with us and the MDs. The "least worst" option was a partial replacement, so off hospice we went. Blessedly, her MC could take her back so long as she didn't need skilled nursing (hospice RN declared daily wound care a hospice comfort measure and even did the staple removal!). So she was back on hospice the evening of Day 6, the minute she rolled in the door of her MC. 

This decision to replace (rather than unsuccessfully pin, or bedbound comfort care only) had been taken in light of Mom's quality of life 3 seconds before she fell. She was still mobile, enjoyed her food, enjoyed our visits, enjoyed her caregivers so long as a shower wasn't the activity, enjoyed her kind of music, and we still went out on drives if I'm remembering right. We wanted to give her her mobility back, and were successful. It didn't last long, but we would do it again-- in her case. She died seven months later at 92. For MIL, we would do those hospital stays for cellulitis again-- in her case. She died with both feet on, quite an achievement for the family members who finally decided to cut off the ciggie access. 

This is all personal experience. My sibs and I seemed to tacitly agree that "Mom as she is now" was who we were making decisions for. If someone were to be making quality-of-life decisions for me right now (age 69), I sure wouldn't  want them to be basing their thought on 29-yr-old me's life quality!!

On a debatable philosophical note, I believe I'm in the minority here when I say that both Mom and MIL were still Mom and MIL right up to their deaths, and Mon's dementia was pegged at stage 7 for many things. She may not have "been all there", but she never stopped being Mom. Ditto for MIL. So the things we did, we did for the person we had always known and loved. 

Sorry this is so long, but I want you to have plenty of input for your cogitations. 

mommyandme (m&m)

I’m sorry for all these difficulties.  This may be an ignorant question, sorry...what would change if you go the palliative route?  

I figured palliative is a common stage for us as at-home caregivers, a norm so to speak. Most of the time all we do is try to keep our LOs happy & comfortable.  

I so hope you can find some peace today. 

CateM

I saw this post and it touched me I think because it's kind of what we are going through with my gram right now.  She has VD and is 95 going on 96.  She certainly is not the gram I remember but one thing that is still there is her strong will.  My mom and I and her team of caregivers at this point are just trying to support her and keep her comfortable.  She eats ok but her interest in really anything is no longer there. The only thing she really still seems to enjoy is going for a drive but even with that she tends to sleep a good portion of it.

My best to you and your journey with your LO. 

RobOT

M1--what a mess.  My thought is to get the CT in case you need to do something special for pain.  I always tell myself to be prepared for what ever I can see possibly coming at me and my father, and, as you know, with head trauma that can be a lot of things.  Thoughts and prayers with you both.

M1

Thank you all for your responses. She still didn't want to go today and because she was no different behaviorally I didn't insist. She slept most of the afternoon and just went back to bed, looks horrible, like someone hit her on the forehead with a baseball bat, big cut across the bridge of her nose that's borderline for stitches but she heals really well typically.  Two black eyes. But not in any more pain than usual. Amazing that nothing's broken. Tough little b!!! as one of her docs once told her.

Focusing on a day at a time.  Mommyandme I agree with your question, not much changes from a practical standpoint if we say it's time for palliative approach because we're doing a lot of that already. But there are some things I won't pursue medically-like more dental appointments, or skin cancer screening every three months for this redhead who spent her life in the sun.  Following up on her known lymphoma, which we wouldn't treat at this point. 

 I do think she's at risk for a brain bleed for a week or two so no aspirin, and keeping her quiet will be the real challenge.  And June you're exactly right, I'm feeling the stress for sure. Palliation for me will be harder to come by. Talking to you guys always helps.