Advice needed - Mum on End of Life Care - a total rollercoaster

[Confused12]

Hi, my mum has had FTD for nine years. Eight weeks ago at work I got a call to say she wasn't really eating or drinking. I went to the home to see her and filled in an End of Life Care Plan. Over the last weeks she has been in bed for five. She was on minimal fluids only for nearly a fortnight and I prepared myself for the worst. The she had two days where she ate a lot of food (ie spoon fed by nurses) then she's gone back to not eating a great deal, drinking roughly 500ml a day.

I was ill at work, the Dr believes with anxiety relating to my Mothers situation. I am due back at the Drs on Friday. My Mum, today, looks peaceful and awake. Other days she has slept for the majority and had a mottled effect on her hands and knees. Her body temperature flits from hot to cold, there is little regulation.

My dad died suddenly four years ago today, non dementia sufferer, and I would really like to be with my Mum when she passes, but neither the nurses at the home of myself have any indication of it being close or not. Meanwhile I have a full time job that I remain absent from.

Any previous experiences or advice on such a situation would be greatly appreciated,

Kindest regards, V

 

[Angie1996]

I am in the same situation now, my dad was sent out of the hospital to a new nursing home 7 days ago, they said he had 2 weeks to live, he is still here he drinks between nothing to 150 ml, he eats very little, and is very thin. He is on End of Life care.

You are sounding just like me at the moment, my dad's skin is turning purple on his fingers, knuckles and his hands are like blocks of ice.

It is very hard to predict how long someone has left, I know he is definitely going to go, but how long is something I dont know? I have calmed down a bit now, as I kept expecting him to go all of a sudden, but he is still poodling along in his own way.

Some days he wont eat/drink/sleeps all day, the last 2 days he has been awake, drank smalls amounts, but does not eat a lot to be honest. Today he even had the strength to drink from a beaker himself, which he has not done for nearly 2 weeks, so it really is up and down.

It could be today/tomorrow/next month/next 3 months?

I just take each day he is still going as a good thing, as I know he is ok at the moment and seems in good spirits, but some days he looks so sad........

Good luck to you on this tough stage, its a mare............very stressful .... x

 

[snowygirl]

Hi, my mum has had FTD for nine years. Eight weeks ago at work I got a call to say she wasn't really eating or drinking. I went to the home to see her and filled in an End of Life Care Plan. Over the last weeks she has been in bed for five. She was on minimal fluids only for nearly a fortnight and I prepared myself for the worst. The she had two days where she ate a lot of food (ie spoon fed by nurses) then she's gone back to not eating a great deal, drinking roughly 500ml a day.

I was ill at work, the Dr believes with anxiety relating to my Mothers situation. I am due back at the Drs on Friday. My Mum, today, looks peaceful and awake. Other days she has slept for the majority and had a mottled effect on her hands and knees. Her body temperature flits from hot to cold, there is little regulation.

My dad died suddenly four years ago today, non dementia sufferer, and I would really like to be with my Mum when she passes, but neither the nurses at the home of myself have any indication of it being close or not. Meanwhile I have a full time job that I remain absent from.

Any previous experiences or advice on such a situation would be greatly appreciated,

Kindest regards, V

Hi confused 12
I'm not sure that I have any advice to give but having watched my mum pass away in end of life care recently I just wanted to send you my best wishes. Mum only lasted 5 days and didn't eat again once she stopped. In those 5 days no-one could tell us when she would pass but in the end a drop in body temperature and a change in her breathing (as in it got quieter)alerted us and she died within 30 mins. Its so so hard to predict and in the end my sister wasn't there despite being there loads the previous days. I hope you are there in the end if you truly want to be. big hugs.x

 

[Spamar]

OH, in a care home, had a sudden downturn. Doc said hours, maybe days. He lasted 15 hours. He had mottling as well, plus quite cold. However, he hearing was still OK, just a warning!

 

[CeliaThePoet]

Perhaps these links will help. My thoughts are with you at this difficult time.

https://www.crossroadshospice.com/caregiver-guidance/physical-emotional-changes/

https://www.compassionandsupport.org/index.php/for_patients_families/death_dying/signs_of_dying

 

[Confused12]

Thanks everyone, I'm feeling a bit lost with it all right now. Angie - it sounds like we are mirroring each other at the min. Thanks to the others of you who have replied, it's sad that we all have to ho through it Xx

 

[Red66]

My Dad lasted 12 days with no food and minimal fluids. On day 12 we visited him in the morning time and his right elbow was purple, then the mottling began starting at his feet and eventually to his face. Once it reached his face it was a matter of an hour if that. He had warm hands at first and they lost warmth as the day went on. we saw the purple elbow at 915am and he died 1712am same day. I lost Dad in August this year. It's a hard time what you are going through. Stay strong x

 

[Confused12]

Red66 I am so sorry for your loss, Thankyou for sharing your very sad experience with me. I do appreciate it because it gives me signs to look out for. She's been very sleepy today, 4 sips of juice and two spoons of porridge, she looks awful today whereas yesterday she was awake yet peaceful. I think, like you are all saying, it's a day at a time , V x

 

[Ameliasmama]

My dad died a year ago today. The circumstances were slightly different as he was hospitalised for the month previous due to being in a car accident. I knew however after he got his third bought of pneumonia that he wasn't pulling through.

He didn't eat anything from 21st - 25th December, when he somehow managed to eat mashed potato and soft veg from his Christmas dinner. He then didn't eat anything else up until he died. The day before he died I was blunt with the nurse, fed up of being told he's doing alright I said how long. To hear her agree with me was heartbreaking, but I can remember feeling grateful that I wasn't imagining my dad dying before my very eyes.

What she told me made a great deal of sense, like a midwife can't pinpoint exactly when a baby will be born, they can prepare for the birth occurring. Just as even the most experienced palliative care nurses can pick up on signs that death is imminent, it can never be possible to pinpoint an exact time.

As it turned out, my Dad's oxygen sats dropped terribly, his skin was incredibly cool to touch and he changed in himself, in that it seemed a sudden calm came over him. Which I now believe was his acceptance of what was to happen. He died within 3 hours.

I must say though, I'd hoped to be there holding his hand when it happened too. However, he waited til we literally nipped off the ward. We came back and he'd gone alone. That was hard to deal with, but I've come to accept that was his choice and his way of doing things.

Sending lots of love your way and peace for your Mum xx

 

[Toddleo]

Any previous experiences or advice on such a situation would be greatly appreciated,

Kindest regards, V

hello Confused12, just wanted to chip in with a bit of hand holding, and say "you're not alone"
This forum is so great for things like this, there is always someone who's trodden your path, so to speak. Mum is in a nursing home now on end of life care. Seems to survive on sips of tea, and the odd mini chocolate button dissolving on her tongue.

She has been there about 2 weeks or so, and, like your experiences, no one knows when her time will come. Some days shes alert (ish), and others she just lays there. Some days she has boundless fidgety moments and I wonder where she finds the strength. She is so anxious though, she never looks restful, they are now trying diazepam twice a day.... as I said, we can all go through this together and send eachother cyber hugs.

God Bless to you and mum.

 

[Confused12]

Ameliasmama and Toddleo, Thankyou for sharing your (sad) experiences with me. For the last two days she has looked awful, tired and pale. She is taking about 500 ml fluid ina good day which is the thickened juice. They are blending her food to a mush, she's gaving about 8 spoonfuls a day. I have been off work three weeks, I was ill at work and have really bad muscles aches and am exhausted. I'm at the Drs tomorrow and just don't know what to say, I want to be with my Mum, but I have no idea how long it will last but I am also worried about work even though I know my mother is my proirity. i feel like this bit is the tip of the iceberg of things to come and don't want to fall at the first hurdle, V x

 

[Toddleo]

Do you know Confused12, that one day (in the dim and distant future) you will look back on this hideous period of your life and think "do you know what? I managed it, somehow I managed it and survived" and you will think back on the good bits of mum's life with a smile and a self congratulatory pat on your back!

 

[Confused12]

Here's a question....did any of you carry on working throughout the experience and juggle both work and visiting? X

 

[Angie1996]

I am, although I only work 3 days a week, as went part time this year to help my dad more as he got worse. We cope in our own ways, work distracts me.....if I am at home I think way too much and cry all day.......

You just cope and do what's right for you x I have just updated my dad Brian's post and me and you are going through the same phase at the moment xxx

Sending big hug xxxxxx

 

[Confused12]

Hi Angie, we certainly are arent we?!

My mum has had dementia nine years, I juggled my job and cared for her with my dad until it took his toll on him. It got to the point where it was totally exhausting and although we didn't want her to go into care we had no option. I normally work full time so was thinking of short hours for a while but I commute to work to so could be a long way away if the phone call came. I spoke with a friend tonight who missed his dad's passing and regrets not spending that last bit of time with him before he was gone. I do want to spend as much time with her as I can, she's my only remaining parent. I'll see what the doc says in the morning about me. Thanks Angie, V

 

[Ameliasmama]

You've still got to think of yourself throughout all this Confused. I mentioned in my previous post my Dad had a car accident. Up until that point he used to drive my Mum on her errands and was still independent. I was a full time carer to my now ex-partner and my little girl who was 10 months old at the time.

Overnight I became the sole driver in my dad's 6 immediate family members. This meant I had no choice but to take everyone to visit Dad to the hospital he was in which for the first 2 weeks was 15 miles away. I barely saw my daughter for those 2 weeks, most days I was doing 3 round trips, leaving at 9am and not getting back til late at night.

It should have got slightly easier when he was transferred to our local hospital but it didn't as it meant I was right near the hospital but having to travel 6 miles to pick up family, go visit dad, take them home and drive past the hospital again on my way home. Last Christmas Day I did that 3 times.

I ended up physically and mentally broken. After he passed I busied myself sorting the funeral, dealing with the coroner, basically sorting everything as my mum was in no fit state. The day after the funeral, when I literally I had nothing to do, it all hit me like a ton of bricks. Not once had I thought about myself and I paid the price for it.

I wouldn't change what I did, it meant all my dad's children and his wife got to spend precious time with him in his last month of life but I guess what I'm saying is you still need to think of you. I was running on pure adrenaline, when that run out I was burnt out and it took me a long, long while to feel me again. And then there was grief added on top of that. I'm not going to lie, it definitely contributed to my relationship breaking down and I feel guilt about that sometimes too now. Help was there, but I was far too stubborn to take it or even ask for it.

Please do whatever you can to make this difficult time easier for yourself. when your dear mum passes (and this may sound horrible but I hope I get it across as intended) she's gone and will be resting easy, there's no one who can take care of you other than yourself.

Sending lots of love xxx

 

[Confused12]

Aww Ameliasmama, im sorry to hear what you have been though in this Dementia Journey. When my Dad died of a heart attack without warning I went to the registrar to register his death. She said to me at the time 'make sure you take the time to digest this and deal with this' she said her parents death hit her years later because she just kept her head down and more or less ploughed through it.

The Dr signed me off for another two weeks yesterday, and he went to see My Mum too. He said to me 'you need to take care of yourself' so I have heeded your words and his. I know in reality I can only do so much. I have a young son who needs normality and my attention.

It makes me so sad, that everyone who has been through this dementia journey comes out battered and exhausted. We did our best to keep Mum at home before she went into care. The social worker never used to help much, it seems a struggle to be heard. My Mum started a small fire in the house by putting something on a bed side light and we knew we couldn't keep goig anymore with it, she needed 24hr care.

Sending you love, I really appreciate you taking the time to help me xx

 

[Angie1996]

I am pleased you have taken some more time off, you do what you need to do to cope.

How is your mum?

 

[Confused12]

Hi Angie, I read your post to see how your Dad is doing. I'm so sorry you're on this rollercoaster of emotions. Like you with your mum, I haven't really got over the loss of my Dad because he died of a heart attack and I didn't get to say goodbye.

The girls at the home wake my mum up to feed her, I think she would be better sleeping and fed when she was awake. She gets hiccups, just a couple, mainly after liquids. My mum has jerked or had twitches for a while, mainly when she is awake.

She is more wide awake today. It's a complete rollercoaster because ive watched her look really ill for two days and now she's awake and not looking too bad. The Dr told me there was no coming back from this so I am under no illusion. Her eyelashes are coming out, he says that is malnutrition.

I'm thinking bout you and your lovely Dad, sending love , V

 

[lemonjuice]

Her eyelashes are coming out, he says that is malnutrition.

I'd not heard of that. My mother has no eyelashes at all and not had for about 6 months but she's still putting on weight!