signs of end of life/dying stage

Discussion in 'I care for a person with dementia' started by totallyconfused, Jun 16, 2019.

  1. totallyconfused

    totallyconfused Registered User

    Apr 18, 2016
    Any experience on the signs?I read that its important to know what stage so as to get proper care, pain management etcc. I find it hard to get through to doctors, people give different information and the consultant was of no help last time and we arent due to see him again until January.

    I worry about my mother. She lost 8 pounds in May. She will be weighed again at dietitian tues week. If she has lost more weight then the gp will do bloods.

    Shes more frail and unsteady. More tired. Not as responsive to her enviroment.

    Shes more restless and having alot of lucid moments.

    Swallowing seems to be getting worse and appears to have more mucus/phlegm although she has infection right now so maybe that makes these things worse.

    I read that hospice care can be given at home if you know there is 6 months to live but how do you know-is it a diagnosis of another disease?
  2. la lucia

    la lucia Registered User

    Jul 3, 2011
    This is how I did it - it's a bit long but I know how much other's (specifically @Sam Luvit ) open discussion helped me:

    I had no advanced warning. I had made the decision a long time ago that I would care for my mother at home until she died. A frank discussion with my mum's GP a year or so previously meant I knew that services in our area are totally stretched and useless for regular care whether you have money or not. And I knew that end-of-life care was a bit better.

    But 'signs' are variable. My mum was on pureed food for several years before she died. I don't really buy into the concrete nature of 'stages' having watched both parents die of dementia without ticking the boxes. My mum was mobile until a few days before she died for instance. Although she was 98 and had advanced dementia her death took us by surprise.

    It's best to try and find out what's available in your area and work from there. We literally had a few days notice that my mum was about to die but our CCG at the local hospital kicked into gear and organised emergency Continuing Healthcare funding without blinking.

    We had all the drugs and equipment, including oxygen, organised within hours. It was a bit frantic but it came together. My mother was brought home from hospital by 6 guys who recce'ed the route and literally packed her in a bubble bag. They were so careful. She came home to me and my daughter plus classical music and a house full of flowers. And she knew it. She smiled broadly.

    All hydration and medication had been withdrawn although I lobbied for hydration to be maintained until literally the moment my mum was put in the ambulance. No one argued with this.

    This funding paid for carers, and an overnight sitter, but none of them are allowed to administer the morphine that was necessary every few hours. That was my job so I slept on the floor beside my mum. I didn't sleep for several days. A week in fact if you count her hospital nights.

    The hospital palliative care team were excellent. The nurse in charge maintained phone contact, backed my decision making all the way, and arranged for district nurses to bring the syringe driver when the time came.

    The only person who let me down was the Hospice at Home nurse from a famous organisation who I called out in the middle of the night.

    On one hand I had the hospital palliative care nurse telling me it was fine to make decisions on the hoof about the timing of morphine administration etc and yet the H at H nurse wouldn't even administer the Just-in-Case drugs supplied or listen to my opinion about what was needed.

    She was appalling. She played some kind of weird gatekeeper game which resulted in me being alone with my dying mother who was in severe pain and distress. She tried to tell me it was because my mum needed her pad changing!!!

    That's a memory that will haunt me for ever. The morphine available I had was no longer working and my mum was suffering. I was having to hold her thrashing arms to prevent her pulling out oxygen tubes and my super stoic mum was begging me for help. Luckily the sun came up & the palliative care nurse called on my mobile which I held with my shoulder and my ear because I didn't want it on speaker and my hands were occupied with my mum.

    But then the palliative care nurse (who was as outraged as me) pulled out the stops, organised our GP to come and open the Just-in-case pack and administer stronger drugs. Later that day the syringe driver was set up.

    Every single person EXCEPT the stupid hospice nurse treated me as an equal, discussed drug choices and plans with me and backed my decision making. They were great . My mother died the next day. There was just me and her there. I didn't notify anyone official until my daughter arrived and we had a few hours alone with my mother.

    Don't be put off by my bad experience with the H at H nurse. I've reported her, she shouldn't be in the job and I don't think it's necessarily a problem elsewhere. But maybe ask your GP what is available in your area and how on the ball they are. If it's something you want to do at home find out what the deal is with the hospital palliative care team and what sort of support is available. It's good to know the possibilities and be prepared but you can't really plan it.

    Apart from a supportive team who really did treat me as an equal, what helped was the hospital bed we had and keeping a strong hospital bedcover under the special silk slide sheets. This enabled simple 2 person physical lifting when needed. A genius idea that came from the specialist ambulance crew.

    Like everything else with dementia in the UK it's one big postcode lottery. Hope this helps.
  3. totallyconfused

    totallyconfused Registered User

    Apr 18, 2016
    #3 totallyconfused, Jun 16, 2019
    Last edited: Jun 16, 2019
    thank you for that-it was very helpful. thanks for your honesty. Fair play to you for achieving all that and you did your mother proud. We got the hosppital bed but havent used it-she has been sick and very tired recently, didnt feel right to change her bed at this time.

    The previous public nurse thought my mother was fine. we were given such bad advice.A new nurse was assigned a few weeks ago and she changed everything-introduced home help, hospital bed, referral to dietitian, wheelchair if we need it etc.It really does depend on the people and services involved.

    good advice, will look in to the services. A tad nervous looking to the future and whether we will manage this at home. Its tiring work but if we cant then Im glad we got this far.

    Also-agree on the stages. Everyone is different. My mother is still walking and just about managing the toilet with alot of help but shes so frail, losing weight, swallow problems, speech becoming poor, facial expression changes-doesnt really make eye contact just the odd time now. I dont thnik its a case of going through the "stages" for everyone. It can go in different ways, fast, slower etc
  4. Sam Luvit

    Sam Luvit Registered User

    Oct 19, 2016
    East Sussex
    It feels like a lifetime ago, it’s sad that such a horrific time helped anyone, but if it helped @la lucia, then at least something “good” came out of it

    Sorry, but nothing will induce me to read back at the moment @totallyconfused, so I can’t refer you to a page

    However. @la lucia is right, find out what you can about what might be available in your area, do it while you have time to think, coz when you are in the middle of it, you can barely think, never mind plan

    My situation was different, or I hope it wasn’t the norm. Mums GP failed her, he didn’t change her meds on discharge from the hospital following her stroke & the few bleeds on the brain, became catastrophic

    I believe there are some “core stages”, but the time to get to them, or how long they last is different for everyone. Some people start to talk at six months .. for others it’s at six years old. Dementia is the same. My mum was “early stages” for three years, then went through middle & final in seven months. She was continent to the end, but tired after a mere twenty minutes of talking.

    Up until her fall in June, Mum was still feisty, eating reasonably well, I wasn’t allowed in the bathroom with her & she used the loo without any help

    That final fall, or falls, wiped that out. She gave up. It was a step too far. The Consultant told me she was coming home to die ... she needed me to understand what I was letting myself into.

    I knew it was the end while she was in hospital that last time. I didn’t think she’d make it home, but she pulled everything together for one day & they agreed to discharge her. She was one determined lady my mum

    If you think it’s that time for your mum @totallyconfused you can ask her GP to visit & make an assessment. If the GP believes it’s “end of life” (the GP thinks that’s within six months), then the GP needs to make a referral to the CHC for funding. Push it. Make sure the referral is done immediately

    If it turns out to be wrong, CHC is withdrawn & things carry on as before. Don’t worry about getting it wrong, it can be reinstated if things deteriorate later.

    Mums GP didn’t realise he needed to make the referral ... I had to keep phoning & pushing . that delay cost financially and emotionally

    Once CHC is awarded, if your mum has carers in place, tell the agency & ask them to arrange night sitters (you can have up to three a week ... no one is going to tell you that ... you have to push for it). The agency get paid by CHC. They will push for you, it’s in their interests. Let them take the strain

    Hospice care at home can be amazing. The first night mum stopped breathing I was freaking out. Eleven at night, on my own, I called them. I cried down the phone, they listened. Unfortunately there was no one available to come out. That was the only time there was no one available, but you need to understand it can happen. Get numbers of friends or family who can (and will) drop everything at a seconds notice and come to you. You may not need to call, but it’s reassuring to have the list

    You may need to be a bit “canny” to get things done, especially if you come up against anyone who decides you don’t know what you are talking about ..

    Two days before the end, I asked the district nurse if they could fit a catheter, not because mum was incontinent, but because her fractures were pulling apart due to her severe weight loss, making getting on and off the bed to use the commode agony. They refused. They said mum didn’t want it

    So. I told them mum needed the commode. I couldn’t do it solo ... so ... help yourselves ... I’m going for a coffee

    Five minutes later they told me they were fitting a catheter.

    Every person I’ve spoken to, heard talk etc has said the same thing. Mum is not leaving while you are in the room. Maybe dying is a very personal private thing, maybe it’s a final attempt to spare the ones they love, whatever the reason, you can almost guarantee they will hang on until your bladder can’t

    Mum knew she was at the end. She even asked me, “Tell me honestly Sam, am I dying?” I wanted to lie. I wanted to sugar the pill, but I told her the truth and she thanked me for my honestly. I hated myself, but I knew she knew, so I wasn’t telling her something she didn’t already know. How long she remembered that conversation for I don’t know, but I will relive it all my life

    I’d heard many times, tell them you love them, tell them you forgive them (sorry couldn’t do that one), tell them it’s ok to go.

    I still needed to eat, go to the loo, get things ready for carers, wash the sheets ... so I was in and out all day long. Every time I came back in I was cheerful. Every time I left I said “I love you” and that if she wanted to go have a G&T with dad, that was ok

    I told her not to worry, I wouId look after my big brother (all my life lol), that we wouId figure things out and she didn’t need to worry. I told her we knew she loved us

    It doesn’t really matter if you believe it, you just need to say it. That’s what everyone told me. It’s what I did. Five weeks after being discharged from hospital, I walked back into the room after getting a coffee and my mum was gone.

    There is nothing easy about the final stages at home. It is eased by making the carers take your side, refusing the ones that fight you. Take every second of support offered and ask for more. This is not the time to be proud. This is the time to beg and cry

    I hope that’s not too harsh, I really hope it’s not upset you
  5. totallyconfused

    totallyconfused Registered User

    Apr 18, 2016
    #5 totallyconfused, Jun 20, 2019
    Last edited: Jun 20, 2019
    Thank you for your honesty. I prefer to know the truth, the reality of doing of doing have given great advice that I will keep in mind,

    My mother is still continent and ok walking etc.

    But this year-broke wrist, shinges, seizure,couldnt swallow tablets, then moved to softer food diet, various infections, another seizure, couple uti, and loss 8 pounds in May(checking weight again tues-more weight loss then doc will do bloods. Her legs have become very thin so maybe its muscle loss?)

    She really seemed to give up in the last two months. who could blame her?only so much you can take.She isnt as interested in life, her garden,tires easily(she sends our siblings away after about half hour).She was saying her goodbyes, that she was finished etc. In february the consultant predicted 1-2 year and signed dnr.

    watching her these last couple months I think its sooner rather than later.

    this might sound stupid but I worry about the amount of people in the house, wanting to visit, stay over etc in her final days/weeks.I live at home so I wouldnt have an escape.Plus theres been alot of family drama over the years. You would also be dealing with people suddenly visiting who haven t visited in years.

    My dad died in a fantastic hospice. Sometimes I thnik would it be better as if theres an emergency etc they have everything under one roof and we may not get what we need in time.
  6. Sam Luvit

    Sam Luvit Registered User

    Oct 19, 2016
    East Sussex
    Hi @totallyconfused

    I’m a rubbish liar, so I’m honest instead. A bit too much for some, but I don’t think this is a place for sugar coating what you can expect

    I don’t know if it’s part of the disease, but all the people I’ve met or know with dementia have lost weight. My aunt was ... somewhat rounded, but I doubt if she’s even a size ten now, my mum battled to stay slim, but even the slimmest fitting clothing hung off her as she shrunk in size :(

    I didn’t worry about “healthy diets”, I figured she could eat anything with as many calories as I could get into her. Mum loved cream, so I put it in coffee, on fruits, smothered puddings with it etc. I made her banana milkshakes laden with calories to keep her hydrated, rather than cups of tea:rolleyes:

    I’m surprised at being told anything over a year, I don’t think that long can be predicted with any accuracy. CHC is “less than six months” and I think that is probably about as far into the future than anyone can estimate

    If you think of the energy needed to pull everything together, I’d say half an hour is a long time. I limited visitors to twenty minutes. If mum seemed very tired, I sent them away. A few, who were understanding, could stay if they promised to just hold her hand or read to her while she dozed. My mum loved her garden, but lost enthusiasm for it, so I wouId take her for a slow walk most evenings, pointing out the bulbs that were coming up, or the shrubs I’d attempted to trim back. She could then tell me how wrong I was :rolleyes:

    There were certain people that I knew mum wouId very much want to see, I let them know & arranged for them to visit. When her favourite niece was coming over, I didn’t let anyone else visit that day, as I knew she wouId be tired and I wanted her to have the energy to enjoy her visit.

    There were others, who were full of drama, those I limited to a strict twenty minutes and even turned away several times. Mum just wasn’t up to drama and neither was I :rolleyes:

    Mum had one friend, who didn’t come to my dads funeral, who moved house without telling mum she was going, then had the cheek to phone a friend and ask them to tell me that she wouId be visiting :eek: I told mum that her “friend” might manage a visit (it had been over three years by then), but mum wasn’t interested. So I told the friend to tell mums friend not to bother making the trip:rolleyes: we didn’t hear from her again ...

    I think you have to look at each potential visitor, at the time and decide if it will make your mum happy or anxious. Then either arrange a time (with a limit on the time they will stay) or tell them you will let them know when it’s a good time for them to visit. I had one who moaned to all the neighbours about how I wouldn’t allow her to visit .... hmmmm .... no prizes for guessing why ... but the neighbours backed me up fortunately

    I too lived with my mum, so I understand you thinking you can’t get away from drama queen visitors. On sunny days I sat out side the back door, on wet days I hid in my car on the drive. Once the carers were coming in three times a day, I walked round the block while they were here ... that alone saved my sanity o_O

    A hospice does have the advantage of staff on hand, availability of drugs and can get them administered promptly. They may limit the number of people that can visit at any one time, Some also have visiting times, which may not work for you. I wouId have needed to get back to the house two or three times a day to sort out Pooch and with the distance, that wouId have meant me being away for two hours at a time. So for me, it wasn’t something I was comfortable with and of course, mum desperately wanted her beloved Pooch near by. Bless him, he spent a lot of time on the stool by her bed, nuzzling her hand ;)

    It’s a choice that only you can make. No choice is wrong, or right. It’s the choice that works for you and your mum. No one else matters.
  7. totallyconfused

    totallyconfused Registered User

    Apr 18, 2016
    Your mother sounds quite like mine.Same with garden, sad to see her lose interest but she still enjoys a quick walk to look at roses.

    Half hour probably is alot for her now,Even with the home help 45 mins a day she cant wait til its over and said "thank good someone came for me" when I came back in towards the end.

    Thank you for your honesty.Very hard getting advice from doctors etc although I know its hard to truly know whats going on or when the persons time will come. I will keep your advice in mind.

    All I know is my mother deserves better and hope she doesnt have too much longer.She could rally aagain and be around for a long time. Who knows really with this crappy disease.

    My concern is that I need a break but the carers cant give seizure meds. She may not have one but the last one lasted 20 minutes(we didnt have meds until after this) and she hurt her wrists and ankles and had to get xrays. Very hard getting this done and felt very sorry for her trying to get on the table etc. If the meds could stop it after a min it would be worth it as it would possibly cut down on injuries.

    Ive emailed a few private places to see about services that can give meds as a starting point and will also speak with GP and public nurse regarding services.

    thanks again.

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