Hospital bed time. Moving really fast

Quilting brings calm

I added an Update in the comments

I got a call tonight from the AL nurse. Mom rolled out of bed tonight. Since this counts as a fall ( in my opinion), it’s three falls in 9 days. The AL nurse had previously told hospice that mom didn’t need a hospital bed as her platform twin bed raises and lowers at the head and feet. I would have agreed if asked. However it now appears we need the hospital bed because it has rails. The AL nurse suggested it.

Mom is really sinking fast ( again in my opinion). As you may remember, I didn’t think she’d be accepted to hospice Oct 15, but she was. She really didn’t seem that bad. She then spent over two weeks obsessing about being on hospice until they put her on Seroquel and Ativan. Then she fell twice, was in a lot of pain, and they added oxy for three days. Last dose was Friday. She can have it if she requests a pain pill, but is no longer in her pill pak.

It’s as if she heard the word hospice, decided she was dying (she wasn’t) and is now making it a self fulfilling prophecy. She hasn’t eaten much since she went on hospice, and barely leaves her room unless the AL nurse basically forces her to. She’s lost so much stamina that she can barely use her walker to walk to the dining hall. Which she isn’t doing often. The staff has been showering her and helping her dress- for safety reasons, and that happened before the falls. They bring her meals to the room if she doesn’t come to the dining room.

My guess is she will be gone by spring. I look at the charts and it says stage six and seven can last 2.5 years each. However she is eventually going to fall and break something.

​fesk

I am very sorry to hear this, QBC.

It appears all the falls and major changes happened after the addition of Seroquel and Ativan. From what you have been posting, it also doesn't seem that the medication has been helping calm her. Have you considered speaking with the doctor to adjust or change the medication to something that may help calm her without being as much as a fall risk and possibly having other negative side effects?

I hope you can find a solution so she (and you) can have more peace.

Quilting brings calm

To fesk- the medications did calm her. More on that below

to all:

I was out there yesterday - the old bed was gone, the new bed hadn’t yet arrived. She couldn’t keep her eyes open at 1pm.

I was out there today. New bed had arrived. I must say that it looks really nice- wood looking, even the bed rail looks like wood.

Mom wasn’t any better than yesterday. She had her butt on the front edge of her recliner, with her back flat against the chair seat. One wrong move and she would just slide off into the floor. She wasn’t wearing her oxygen. I paged the staff and they helped her back upright. But she slid down again, leaning to the right onto the arm of the recliner.
Staff brought her in a sandwich and chips because she refused to eat the first lunch they brought her. I got her to eat 1/4 of the sandwich and to take a couple sips of Sprite - which was not easy. She was falling asleep and not very coherent.

The hospice nurse ( not one I’ve talked to before ) called later. She was back in that first position in the chair again. The news is not good. She’s not eating enough to sustain her. We all know what that means. Nurse didn’t think she was over medicated, just declining. And I agree she is declining at a rapid rate. I know where this is headed.

I texted our son that he needed to come home this weekend to see her. He called and I explained. Then he texted that his ex-wife, a nurse, thinks she’s over medicated and she should have an x-Ray. He’s having a hard time with this. I’m afraid he will blame me when the inevitable happens. So I contacted the AL nurse and the hospice nurse in charge and they will reduce the oxy even further and reduce the Ativan to as needed. As a last ditch effort to see if she gets more alert and eats. But no x-ray( I don’t see the need. She’s not strong enough for surgery even if they found something such as internal bleeding, which is my ex-DIL’s fear). Mom asked for no invasive procedures beginning a couple years ago.

Emily 123

I'm so sorry QBC. You're such a good advocate for her and are on top of everything. I agree with you. Tough, tough, tough to have to make the calls, but bless you for following her wishes.

fmb

QBC, I am so sorry that it has come to this point. The ex-DiL (who has not even seen her) is thinking from a curative position as a nurse and not from a comfort (hospice) point of view. Do not accept any guilt trip anyone tries to lay on you. Trust your hospice team's judgment. They have seen these situations before and know what to do to keep your mom comfortable, including the use of the proper level of oxygen to ease her breathing and stronger pain medications as things progress. It does sound like she should be in bed unless they can provide a reclining Broda wheelchair so she is better supported from leaning over and doesn't slide out. Unfortunately the inability to sit up is also an indicator that she is failing. Praying for you, your mom, and your family. ((hugs))

Quilting brings calm

@fmb

The AL nurse is having a hard time accepting mom’s desire to be in bed. That may change after today’s report from the hospice nurse. The AL nurse has been looking at it as if keeping her out of bed would prevent her getting to the point of no return. As if the decline wasn’t to the level it’s at.

​fesk

QBC, sorry to hear where things are at. You, your mom and family will be in my thoughts.

SDianeL

so sorry. My DH declined quickly also. He passed from aspiration pneumonia. The day he passed the facility caregiver brought him his lunch. I asked her why and she said in case he got better like he did before. I said he can’t swallow and is not getting better and to please take it away. She did. Perhaps the AL nurse is hoping your Mom will get better. I would trust the hospice nurse. Praying for you and your Mom. Hugs.

harshedbuzz

QBC—

I am sorry for the place in which you find yourself. It's so hard to live on the edge and emotionally pace yourself to be in the moment.

In a way it sounds as if the AL nurse is attached to your mom (and you) and struggling a bit with this new stage. Perhaps she's not used to the realities of aging-in-place. I would probably give more weight to the observations of a seasoned hospice nurse and trust your own gut.

Wishing you strength and peace.
HB

H1235

QBC, so sorry for what you are going through.

dayn2nite2

This is only one experience, but my mother lasted about 1 year to the day that she was placed on hospice (she entered hospice shortly after she was no longer able to walk, which I felt was the beginning of stage 7). The addition of the hospital bed is a good thing, she will be spending more time in bed now and somehow the staff needs to be more accepting of that. They can put the hospital bed at its lowest setting and put a pad on the floor next to the bed in case she rolls out. Much safer.

NizhoniGrrl

My grandmother had some type of dementia that developed over about 2 years. She had uncontrolled diabetes at that point, in and out of the hospital. She lasted a few months living with my parents and then only 2 weeks in a group home where my mom said she was doing the same thing, just sliding down the chair like she no longer had the strength to stay seated. She developed pneumonia pretty quickly. I truly believe people choose to leave when they have had enough. I would honor that choice and talk to the staff about what you want and don’t want.

It made me furious when my brother was on hospice, ultimately dying from a bowel blockage caused by the cancer, and my aunt started fussing at mealtime about what he was going to eat. A starving person who can’t eat doesn’t need to be reminded that they can’t eat. Or to see someone distressed that you aren’t eating. And you don’t need the staff reminding you about meals for her. Ask them to only bring food/drink when requested. Period.

Quilting brings calm

I saw mom again today. She had not had an oxy today ( so none since yesterday morning), and had not had an Ativan today. Both will now be as needed. With the full understanding that as needed could become back to the level she was previously at. I certainly do not want her in pain or 24/7 agitated and anxious.

As of 1:30 this afternoon, I couldn't see much difference from yesterday. Still somewhat slumped down in the recliner. Still refusing to eat. Still saying she couldn’t hear me two feet away with her hearing aids on. I could understand her words a little better. She got mad at me and got up ( with difficulty) and walked with her walker into the bedroom on her own and laid down. At which point I left. I was so mad at her.

She was mad because I kept trying to get her to eat. Her situation is different than someone who is at the end of life because it’s the end or because they can’t eat or swallow. Quite frankly, she’s putting herself there because she won’t eat enough. She’s given up. That’s what the hospice nurses are telling me.

Carl46

My mother refused to eat at the end as well. I think that used to be called "turning her face to the wall." I'm sorry you are faced with this. I know it isn't easy.

fmb

My mother (stage 6 ALZ) went through a period where she was refusing food, and the doctor put her on Remeron, an antidepressant known to increase appetite and help sleep. It worked for her. Perhaps it is an option for your mother.

Quilting brings calm

@fmb

She’s been on the generic version of Remeron for about 3 years now.

MN Chickadee

Someone I know had her mom pass basically from refusing to eat enough. She was in her 80s, had already had some cognitive shifts, and I'm assuming this refusal was a manifestation of the dementia setting in just like people refuse to bathe or change clothes. In the end my friend found it to be a blessing in disguise; her mom declined quickly and had a peaceful passing surrounded by loved ones whom she could still communicate with and bypassed the horrors of late stage dementia. It sounds like you are doing what you can, you are tinkering with meds and trying everything you can control. Would she take milkshakes or some other treat you brought? If in the end she still doesn't eat enough to maintain her stamina there really isn't anything you can do to force it. Taking the long view, perhaps it seems expected to see this decline now? She lost her husband and those routines not too long ago along with the normalcy and scaffolding that provided, and now is coasting into her own dementia journey which we know can be accelerated by the death of a spouse. Hang in there; I know how long and challenging it is to pace yourself.

midge333

@Quilting brings calm: Why are you mad at your Mom? Perhaps she is at the end of her life? She did qualify for hospice. Perhaps her body is shutting down and she is neither hungry or thirst. If she doesn't want to eat or drink, don't force her.

Quilting brings calm

@midge333

Hospice for dementia has different eligibility rules than hospice for physical terminal diseases. If you have cognitive issues, you do not have to be thought to be within 6 months of death to be accepted. A PWD is accepted based upon how much help they need with activities of daily living. You will hear of PWD that have been on hospice for at least a couple of years.

Mom did not qualify for hospice in August. When she was re-evaluated in October ( a follow-up eval), the intake nurse thought she was borderline and probably wouldn’t qualify. But the doctor decided she did. Within 3 days of qualifying ( and hearing the word hospice) she DECIDED that meant she was dying. She wouldn’t believe it when everybody told her she wasn’t. She raised her anxiety level to the point that they added Seroquel and Ativan. We think that had a lot to do with her falling- which resulted in the pain medication.

Both of the hospice nurses I spoke to in the last two days feel that she is putting herself in this situation and they want her to eat more. Adjusting the medication is my last ditch effort to see if it’s causing the rapid decline. If it’s not, then there’s nothing I can do except wait and watch the inevitable.

tigersmom

@Quilting, I think this is more common than anyone had ever suggested to me. I took my husband to the hospital on August 14 because his agitation was out of control. Five days into that 24-day stay, he pretty much stopped eating. I tried everything to get him to start again — brought his favorite foods from home, pleaded, begged, badgered. Nothing worked. He was released to memory care, where he deliberately hurt himself on day seven by running into a wall and giving himself a giant bump on the head. Four more days in a local hospital, then released back to memory care. He died three weeks later. I took him to the hospital in early stage six. Six weeks later, he was classified 7a. He spent exactly one month in memory care, and one week on hospice. And now he is gone, only three years and three months after diagnosis. Three separate doctors have told me they believe that for him, not eating was an act of will. The only thing he could control was what went into his mouth. So he stopped eating, and pretty much stopped taking his meds. To sit beside him and watch it for seven weeks was torture. I never imagined that this was how it would end for him. I send you my deepest sympathies, because this part is really hard.

harshedbuzz

@Quilting brings calm

I'm thinking of you this morning. How are you doing?

HB

Quilting brings calm

@harshedbuzz

Thank you for asking.

Thursday was no better than any other day this week.

So Friday ( yesterday) I took a mental health day and went shopping and lunch with friends. That helped a lot.Our son is coming home today too.

I got reports yesterday evening from both the AL and hospice nurses. Mom more or less dressed herself, ate a breakfast sandwich, took an indoor walk. She seemed better to them. AL nurse sent me a photo of Mom eating 1/2 a sandwich for supper in her recliner. So maybe the medication change helped. Or maybe it’s a one time rally. I will see her later today.

Quilting brings calm

What a rollercoaster! Went to mom’s today. Saw staff members on the way in: ‘Your mom is doing so well today, she was laughing and just doing great’.

That was not the woman I saw. She was the same as earlier in the week, actually a little worse. Her hands shook a lot( that’s new). She wasn’t any more alert or coherent than a few days ago. I got her up from bed to the recliner so she could visit with our son. We were there about an hour, she wanted to go back to bed. We had to call the staff to help us as she couldn’t get up from the recliner and they followed her to the bedroom as she looked like she might let go of the walker and fall any second. Our son thought it was because we woke her up. I don’t think that was it.

Alone828

> @"Quilting brings calm" said:
> I added an Update in the comments
>
> I got a call tonight from the AL nurse. Mom rolled out of bed tonight. Since this counts as a fall ( in my opinion), it’s three falls in 9 days. The AL nurse had previously told hospice that mom didn’t need a hospital bed as her platform twin bed raises and lowers at the head and feet. I would have agreed if asked. However it now appears we need the hospital bed because it has rails. The AL nurse suggested it.
>
> Mom is really sinking fast ( again in my opinion). As you may remember, I didn’t think she’d be accepted to hospice Oct 15, but she was. She really didn’t seem that bad. She then spent over two weeks obsessing about being on hospice until they put her on Seroquel and Ativan. Then she fell twice, was in a lot of pain, and they added oxy for three days. Last dose was Friday. She can have it if she requests a pain pill, but is no longer in her pill pak.
> It’s as if she heard the word hospice, decided she was dying (she wasn’t) and is now making it a self fulfilling prophecy. She hasn’t eaten much since she went on hospice, and barely leaves her room unless the AL nurse basically forces her to. She’s lost so much stamina that she can barely use her walker to walk to the dining hall. Which she isn’t doing often. The staff has been showering her and helping her dress- for safety reasons, and that happened before the falls. They bring her meals to the room if she doesn’t come to the dining room.
>
> My guess is she will be gone by spring. I look at the charts and it says stage six and seven can last 2.5 years each. However she is eventually going to fall and break something.

Wow can I relate! My 75yo mother descended rapidly after a 3rd fall in 3 mo required surgery and rehab. I moved her into assisted living on June 1 and she could use a walker or cane. In July she started receiving hospice care, was moved into a hospital bed, and now can barely stand at all even with assistance from 2 people and a walker. She is fully incontinent and has been for months. She lives in that bed in that room from morning to night and eats and sleeps in it. She sees me and the caregivers in her AL. It is destroying me bc I don't know how to help her.

I know it's SO hard, but try to keep your mom moving for as long as she can. Once mine stopped, it's been near impossible to regain the 'lost' ground.

Quilting brings calm

@Alone828

I’m so sorry about your mom.

it’s too late for Mom. At this point, she’s only got a week or so left. Just like your mom, she needs two people and a walker to stand. They have to walk with her between the recliner and the bed/bathroom. Today it took two of the staff to try to get her scooted up in the bed so her head could be raised to drink a milkshake I brought. Didn’t work and they finally got her sitting up with her legs off the bed. For five minutes. She’s drinking some, eating extremely little. I don’t think she can process instructions such as sit up, stand up etc. Yesterday she told me for 10 minutes she wanted to go to bed, but she couldn’t comprehend what movements were needed to do that. The staff basically had to just manipulate her into a standing position and ‘walk’ her to the bed.

Hospice told the AL nurse yesterday to stop pressuring her to eat, to dress, to get out of bed- unless she wants to. What she wants, she gets.

The AL staff are all having a hard time with it. Mom’s been there for exactly 5 years today. Longer than most of the staff. They are all stunned by her quick decline.

clarinetist

Quilting, so sorry it’s come to this for your mom. My best to you as you continue this final vigil.

Emily 123

Thinking of you QBC, and praying for peace for you and your mom.

housefinch

Thinking of you and your family and sending you strength and comfort.

Phoenix1966

Keeping you and your mother in my thoughts.

JeriLynn66

Thinking of you and your Mom and praying for you.

harshedbuzz

@Quilting brings calm

Wishing you strength and peace as your your duties as daughter and caregiver seem to be ending.

It seems however knowledgeable and prepared we are, sometimes the end seems to come almost out of nowhere after years of things being mostly the same.

HB