Could Mum be nearing the end???..

Discussion in 'End of life care' started by Careforme, Jan 16, 2017.

  1. Careforme

    Careforme Registered User

    Apr 15, 2014
    53
    Hello, I have posted on here previously and each time received good honest advice and sadly I find myself here again at desperate times.

    Mum has had alzheimers past seven years diagnosed aged 59. The everyday struggle for her and our family to come to terms, support and care has been overwhelming. My father,brother and I have continued to care and look after my mother all this time feeling we can manage and carried on to ensure mum has best care and happiness as much as possible.

    I have undertook a huge amount of responsibility and without bragging or saying my father and brother have not done as much as me I have. Everything, personal care, cleaning, dressing, feeding, outings. I have done it because it's my mother, my best friend and I wanted to do it all. My health has greatly suffered and a whole lot of things pushed to one side and after last couple of months it has been so bad.

    Mum has been diagnosed now epileptic a year back which has just been horrendous watching her seizure and the aftermath each time.

    Mum was admitted to hospital mid Nov 16 with pneumonia and blood infection and was only allowed home on 23 Dec 16. During this period we were told by consultants and doctors that mum was very ill and to expect the worst. It was horrific. The day I had always feared and I knew it before they told me. I had break news to dad and brother.

    She pulled through it with antibiotics treatment however we knew she was still tired and weak. We had only been out of hospital for a week and returned on 1st Jan 17 having a bad seizure.

    Again went through same situation. Mum had leaked fluid and now treated for pneumonia again. We got through infection however still in same position of unwell.

    Mum was discharged home on 13 Jan 17 and after three hours at home we were back in hospital after suffering another big seizure

    We are still in hospital today. I can see my mother going downhill and I speak to doctors and would rather they are honest. No one knows what will happen next, how long to go or what but it's terrifying and so painful for us all to watch. At times she perks up and laughs ridiculously and it's great but I just wish I knew what is happening to her.

    What we face now is if mum is discharged what do we do next. Neither of us want mum to
    Go into care but it is just impossible to care at home and be there 24/7. I want to be there,so do dad and brother and they say they will cope but I'm the only one being realistic here. Before I would never ever imagine I would say these things.

    One more concern is mums donepezil has been stopped due to seizures and epileptic medication they have increased for mum. I believe there can be withdrawals from this and a further rapid decline?

    I know no one can see into future but I would appreciate any advice?

    Thank you so very much x






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  2. canary

    canary Registered User

    Feb 25, 2014
    10,229
    Female
    South coast
    Hello careforme, Im sending you huge (((((hugs))))) as you are sounding desperate.

    Id guess the doctors just dont know what will happen rather than being secretive. This time last year my mum got pneumonia and was in hospital. I too was told that she probably wouldnt survive, but she pulled through. Since then she has had 2 more chest infections, a stroke and countless UTIs. After the stroke I was told that it would probably be the end, but she pulled through again. Its been a rollercoaster ride and I did not think that she would see Christmas - but she is still here. Other people in her care home have declined and passed away very rapidly. So, who knows?

    As mum is in a CH I dont know exactly what is available at home, though I have heard of hospice at home and Im sure you must be able to get some help. Make sure you speak to the hospital SW and get something in place before your mum is discharged.

    I do not think that you need worry about further decline from stopping the aricept - this is mostly intended for the early stages and after a while it makes no difference. Quite often, once you reach the final stage and the body starts closing down, the doctors take people off all their medication so that they can pass away peacefully
     
  3. nellbelles

    nellbelles Volunteer Host

    Nov 6, 2008
    8,373
    leicester
    Hi Careforme

    I must be so difficult for all concerned, the Doctors will be doing their best unfortunately something's are beyond understanding even for the Doctors.

    I hope they can get the seizures under control, they are distressing for everyone.

    I think you need more support if they say Mum is fit enough to return home, if the CH route becomes necessary I personally would think a nursing home would be needed to care properly for your Mum, I think you need to talk to the hospital SW aNd the Doctors about the best way forward.

    Please keep posting so we can help you at this difficult time.
     
  4. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    1,535
    England
    Careforme. it is so horrendous watching your LO suffer, especially seizures and like you and canary we've watched this for a while.

    The Dr's really are working in the dark. They possibly know even less than we do about the progress of dementia. especially in the latter stages, when Drs assume they will just pass peacefully and somehow that doesn't happen.

    I wouldn't worry about any stopping of medications. My Mum hasn't received any of her heart medications for the past 2 and a half years and if anything she seems in better health than she was whilst taking them?:confused:I think I've posted before but it's almost as if the brain produces a natural immunity.

    Don't assume it will be quick, though if she's already had two bouts of pneumonia it may. From my experience it's not until they tried two- three lots of anti-biotics which have had little effect, that they stop prescribing. So if you intend bringing her home be prepared for a short or a long time. How will you cope long-term if that happens?
     
  5. Confused12

    Confused12 Registered User

    Aug 9, 2012
    42
    Hi, my mum was diagnosed with early onset FTD at 60, the disease rapidly progressed and she went downhill in what she was able to do pretty quickly. My dad cared for her at home with my hisnaband and I help. My son was a toddler at the time. We did it for 4-5 years and were constantly exhausted whereas she had boundless energy. My husband and I had and still have, full time, Intensive jobs. We got a carer to come in twice a day to clean and feed her, the. She went to day care twice a week. The toll on my dads Heath was unbelievable, he ended up in hospital three times because he looked after my mum more than himself. My mum started a small fire at home, Id been begging my dada at the end, for his sake to consider Time care and it wasn't til the fire he realised how much pressure we were all under. He sat and cried.

    We did everything fort mum at home, without help for so long but it's true that the carers feel the pressure rather than the cared for. Please remember to look after yourself in all this, have time for you. I was all engrossed and missed so much, even of my young son because I had to help with my mum, and I wanted to.

    When people with dementia go Ito car it is the hardest thing, the guilt hurts badly, but they get full time care and attention and you can visit for a long as you want every day but it gives you time to rest and enjoy being with them Instead of being constantly frazzled.

    Sending love at this time, V x
     
  6. Careforme

    Careforme Registered User

    Apr 15, 2014
    53
    Thank you so much to you all for your replies and advice you have taken the time to send. It's a great comfort to hear these things but so sad to comfort each other in these circumstances. I wish it was all for a happy purpose so to speak.

    I completely sympathise to every person going through these tough times and the strength each and everyone has shown knowing how overwhelming it can be.

    My brother was in to see mum at hospital this morning, then dad and I did the teatime/bedtime shift. I sounds awful saying in shifts but we are there.

    Mum was pretty tired today and bit out of it. Not eating as much or drinking but we tried as always.

    Dad and I spoke with doctor tonight and he did say mum would prob seem like this too esp with her epileptic medication being increased by 50%. I noticed the gurgling coming for her nose and throat over past couple days which before went into pneumonia. The doctor listened to her chest and did say it was clear but could hear the secretions/wet in her throat.

    What concerns me is last admission but had chest X-ray on arrival and was told her chest sounded clear. Three days later the doctor said mum has fluid in her chest and was put on antibiotics. My thoughts are we have not had any chest X-ray this time but gurgling appearing. Who is to say there is no fluid again and does need treated again?

    Also, mums heart rate has been in the 90s even at resting. She has always been low or what seems normal at resting rate. Her blood pressure appears lower too although I know taking fluids is imperative and will up it but this is difficult just now.

    Just looking for any suggestions and advice yet again?!!

    Thank you all so very much and my heart and thoughts go out to you all x







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  7. Ameliasmama

    Ameliasmama Registered User

    Oct 24, 2015
    44
    It's not an awful thing say doing it in shifts Careforme, it's what we have to do to get ourselves through this.

    My dad was slightly different as he was admitted to hospital following a car accident. He was in 2 different hospitals over a month. He had the same rattling noises as your Mother in the first hospital which was put down to pneumonia. They treated with antibiotics and along with his other injuries he improved massively enough to be transferred to a less intensive, closer to home hospital.

    Within days of being there the rattles started again. Chest x-rays were clear but his oxygen stats showed there was definitely something somewhere. He was given 2 more courses of antibiotics as well as oxygen therapy (when he'd keep it on that is!) After the second lot of antibiotics and no improvements it was deemed that the infection was more than likely aspiration pneumonia caused by his struggles to eat and drink. Have your mums doctors mentioned this could be the cause? The antibiotics were withdrawn and we were left to watch and wait. After this his swallowing ability diminished to pretty much useless and he went rapidly downhill. 3 days or so after he last had something to eat or drink he passed away following a heart attack, prior to which his blood pressure dropped and his heart rate massively increased. However, he did already suffer from coronary heart disease and an irregular heartbeat and after the trauma of the previous month it was no surprise to me that that's what ultimately caused his death.

    I guess you need to have a chat with the doctors on what they suspect to be the cause of your mum's breathing problems, it was a process of elimination in my dad's case, are they going to try more antibiotics and ask if they intend on investigating the changes in her heart rate which in turn will raise questions about possible treatments for that.

    I really hope your mum starts to rally soon, it's an incredibly difficult situation which I wouldn't wish on anybody. One min we were in a trauma ward, then making preparations for him to come home albeit with a lot of extra support, to making DNR decisions and watching him go downhill within a couple of weeks. Remember to take care of yourselves in all this too xxx
     
  8. Careforme

    Careforme Registered User

    Apr 15, 2014
    53
    I am completely overwhelmed from all your posts and I want to thank you all once again for your sincere words. Everything just seems to make sense and understandable comfort to me.

    Brother and dad been in to see mum this morning/afternoon. Myself and brother doing five/six hours to let dad come in for a while as it's too long for him but he wants to.

    I came in before tea time tonight so was in time to get ready for mums dinner. However, when walking into ward dad was saying hurry up. I could clearly see mum was not right and dad said she had slept for two hours this afternoon but awoke looking terrible and all over place. Since wakening mum had been incredibly jerky twitchy seizure like.

    Dad got doctor and he witnessed it for himself and said mum could potentially be having a silent seizure. It was just horrendous again watching mum like this the not knowing if it was going to go into a full blown one. It took her a further two hours to being a little better. It's just awful, the unknown. I left after ten o clock tonight having helped get mum changed and her medicines and I'm just a nervous wreck.

    Tomorrow we are going to see a Care Home which we had appt in last week before mum coming home. We decided it was best still to go as we have the time the three of us to go and knowing mum is in hospital. The visit tom was looking to see if they could accommodate for respite but now I am just not sure what will happen.

    We will need a high level of caring support in at home which we still need to get with social work help. Is this enough and possible respite days? We just don't know. It's going into the unknown again. What do we do? How do we know if it's right? This feels like just another phase we need to pull together on and get through but it just feels like it's tearing us all apart. My mum and dad have been together 40 odd years, my mum has been like a sister to me and we just all so very close.

    I'm nervous for tomorrow. Nervous about the visit. Nervous for what day brings for mum. Nervous for what we do next getting out of hospital. They do not want keep mum in any longer due to infections etc. We need OT Involved again they have yet to come see us. I have no idea how we are getting through this but from finding the strength.

    I am sorry for my long posts, I guess I am unable to keep things to myself which I do at times very much but I just always look for hope and answers and I know I may not get that but I will listen!

    I know if mum comes home how she is just now and with no package of care in place etc I absolutely dread and worry so much how things will be. I have never ever felt like this before and I am always as confident and strong for mum but it scares me.

    Thank you xx





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  9. Careforme

    Careforme Registered User

    Apr 15, 2014
    53
    Hello, just a little update.

    Mum took another big seizure on Friday night. We couldn't believe it.

    Medication increased yet once again.

    Brother just called from hosp to say the nurses couldn't get mum awake this morning. It took a very long time. They managed to give her medicine however she could just not swallow this morning and couldn't do it at all.

    Brother said mum been jerking away a great deal this morning.

    I hate saying it, thinking it,feeling it, seeing it but most of all for my poor wee mum to have to go through this.

    I feel horrible and disgusted with myself thinking we could be nearing the end. How do we really know if we are???? No one can say. I feel we are though.




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  10. Angie1996

    Angie1996 Registered User

    May 15, 2016
    515
    Somerset
    I cant offer no advice on this, but wanted to give you a hug, such a tough time for you all x

    Your mum is quite young, so perhaps they are waiting to see what happens with her, I dont think I read the words on her "end of life" I think as she is so young they are still monitoring her?

    From what you have wrote, does it not appear to be a nursing home as the best option? could she get CHC funding? as she sounds pretty poorly.......

    The hospital have to do a discharge assessment etc, and ensure the right care is in place before she is moved, its about her " needs". From what you have written she has high needs at the moment.

    I send you best wishes, reading your posts is so sad x
     
  11. Careforme

    Careforme Registered User

    Apr 15, 2014
    53
    Hi all, just wanted to give you an update...

    Mum went into respite at nursing home on Thursday after coming out of hospital.

    Mum deteriorated pretty bad on Friday and at night. Had slept around 30 hours, non responsive, high heart rate and low blood pressure. Care home called out doctor twice. At night we saw doctor and she said mum did not have long to go and to be put on palliative care medication. We had a very thorough talk and the doctor was great.

    Again back in the situation of what way will this go again.

    Mum still sleeping sat morn and I was heading in to see her. To my surprise, as I was walking out door care home said mum was awake and talking jibbering away. Completely shocked again.

    Mum was up and down on Sunday again and doctor again called out. Wasn't looking good however put on antibiotics for possible urine infection.

    Went to see mum today and she was smiling and laughing away. Unbelievable.

    After all the worrying and how past couple of months have gone, we have agreed that mum will go into nursing home and we have been offered a place!

    I could write and write away here but I feel so pickled and I just can't think straight. It's just been awful. Selfish as in awful
    For us but I have never felt so sad and sorry ever as much as I do now for my mum. I love her to bits and it breaks my heart. Although knowing deep down it's the best thing we could do as a family. We have been through so much the past eight years and I never thought I would see this day for a very very long time.

    I moan to myself how ill I feel. It's like having the flu and tiredness every single day anc I shouldn't moan considering my poor mum and what she had gone through for such a long time. I write this when I actually have been in bed past three hours because I was that tired and felt sick when I came home earlier I literally got right into bed.

    I know I would lie here thinking all this and thought it be best to write it all down to get it out.

    No one knows what tomorrow brings but I hope and pray for everyone on here going through all these horrendous day to day watchings that you stay strong and hold onto and cherish all the great times you have shared as families and carers. You have all done an amazing job and your mother, father, brother, sister, your relation going through this would tell you how glad they are to have you by their side.




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  12. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    1,535
    England
    #12 lemonjuice, Feb 1, 2017
    Last edited: Feb 1, 2017
    It is difficult going through all these crises. I had 6 months of pretty much weekly seizures but they've now gone down to one a month in Nov, Dec and now Jan.
    I've felt wrung out like you must feel and certainly sometimes writing it down can really help.

    I've now just managed to stop jumping every time the phone rings.
     
  13. Gwendy1

    Gwendy1 Registered User

    Feb 9, 2016
    414
    Glasgow
    You are exhausted, and no wonder. The emotional stress becomes a very physical thing. So sorry you're right in the eye of the storm just now. It's dreadful having to deal with your mums illness and coming to terms with her moving into a nursing home. Your mum sounds very poorly. You're doing really well. I don't know how we all get through sometimes! Stay strong, try to get some rest, if you can. X


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  14. canary

    canary Registered User

    Feb 25, 2014
    10,229
    Female
    South coast
    Careforme - thats pretty much what happened to mum too.
    It sure is a rollercoaster.
     
  15. dig

    dig Registered User

    Feb 3, 2017
    2
    End stage Dementia

    My father has rapidly gone downhill since last October. He is in last stages now. He is like a skeleton, double incontinent blind deaf and cannot move. He has constant infections, uti's eye and feels pain. He sleeps most of the time and can just about whisper a couple of words. He wants to go home but I am having problems with social services. I know he has had enough how long will he have to suffer?
     
  16. dig

    dig Registered User

    Feb 3, 2017
    2
    End stage Dementia

    My father has rapidly gone downhill since last October. He is in last stages now. He is like a skeleton, double incontinent blind deaf and cannot move. He has constant infections, uti's eye and feels pain. He sleeps most of the time and can just about whisper a couple of words. He wants to go home but I am having problems with social services. I know he has had enough how long will he have to suffer?
     
  17. Careforme

    Careforme Registered User

    Apr 15, 2014
    53
    Thanks you all for your kind words. I feel for you all so very much.

    The past couple of days have been hard particularly today. Mum was very tired and jerking so very much but today I have never seen her like this before.

    Her facial expressions, noises and how she changed so very quickly one minute to next was just horrible. She was sleeping, one eye open,mouth open then jerking away. It has gone on all day and night.

    Nurses at care home got in touch with doctor who came out to see her this evening. Said to observe her and he was going to write to neurologist again.

    The nurse said her obs and saturation levels were ok. It her upper extremities were heavy but not her lower limbs?What does this mean?

    Tonight I came home and just cried feeling so sad for mum and how this horrible illness is taking her further and further. I wish I knew what she felt, thought, is she sick or in pain and I can only tell by facial expressions. I hate it, I hate it for her and I would do anything to take this on me than her suffer.

    I feel so selfish saying I feel like this. My poor mum how must she feel and I always say that to myself. What she has gone through all these years and there is just no cure for it at all. It's just awful.

    I wish we knew what would happen or when and we just don't know. I'm trying to stay so positive and upbeat when I'm with her and see her and always reassuring her that she will be ok.

    A couple months back when mum went into hosp with seizure she woke during night and said she had died. It was unreal how clear she was saying it. Then was looking and said 'well let me in then' rather annoyed like someone was in her way.

    It may sound silly but from things mum said and been doing I just wonder if she is nearing end. The last two days she has been reaching out whilst lying in bed trying grab things and sometimes blowing.

    I just wondered if anyone else had experienced these things? She did it tonight half awake half asleep and reached out and said it's very nice.

    I know she may be hallucinating but I just wondered. Also at times she seems very content but at other times incredibly jumpy even if you touched her hand.

    Thank you so much


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  18. canary

    canary Registered User

    Feb 25, 2014
    10,229
    Female
    South coast
    ((((hugs)))) careforme.
    My OH has epilepsy, but not like your mum has, although it can still be frightening to watch if you are not used to it, so I have no useful advice. You sound so distraught that I couldnt just read and run though.
     
  19. Careforme

    Careforme Registered User

    Apr 15, 2014
    53
    Thank you canary I appreciate your words.

    I have been sitting reading through TP since I posted earlier and I wish I had the time to reply to everyone too.

    This is just heartbreaking. Knowing what other people have gone through and are going through and only want the best for our loved ones.

    I just feel so scared. Scared of what's going to happen. How my dad and brother will cope if something happens which we know it will but not knowing when. We are all saying to each other 'don't worry about me' when we are all worrying for each other and trying to keep each other going.

    Everyday for the past eight years it has been going into the unknown and now tom is another day of wondering how it will be.

    I cannot thank TP enough for having this site and to everyone who has helped and advised me too. It's a comfort to know we are not alone.

    My thoughts and heart goes out to you all.


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  20. Careforme

    Careforme Registered User

    Apr 15, 2014
    53
    Hello, I am back again in the search of more advice, answers, anything to make things better!!!

    To keep it as short as possible.... mum has just deteriorated so so very much in the last two months. Again, numerous chest and urine infections, eating and drinking very very little, few spoonfuls on days. Sleeping a great deal.

    Now we have another chest infection and on a weeks course antibiotics. I have seen my mum everyday since she moved into nursing home sometimes twice a day.

    I have felt the last couple of days and especially today mum just did not look or seem right at all to me. I know I have seen her very unwell but I just think she seems so different the last couple.

    My brother keeps telling me it's okay, mum just has infection but I really struggle with it and keep thinking this is it, like mum is just going to slip away soon. We have been here several times.

    I know I have mentioned before that mum is epileptic and medication has been greatly increased however today, the nurse said that she went into room and mums eyes were at the back of her head rolling like and she was trembling.

    The carer went and got nurse and within five to ten mins mum appeared to be better. They think this was some other kind of seizure??? I have witnessed mum have some serious seizures but not like this or coming around so quickly.

    I'm just worried sick. I am. When or if something will happen? How long does mum have? I know we just don't know. I wish it was me and not my mum having to go through this.

    I'm just waiting on a call all time now or it be when we are there or that scared to leave her.




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