The end?


#1

After 24 years my father spends most of his time in bed. He is unable to do anything for himself and has been in a nursing home for the last 4 months. For all he has had Parkinson's for such a long time he was still able to feed himself and transfer from wheelchair to bed etc up until last December so his deterioration seems to have been so quick. He finds it tiring to speak and when he does its barely a whisper. He spends most of his time sleeping and no longer wants to listen to music etc which he used to enjoy. He is still able to swallow his medication and eats soft food. He still has an appetite although he will only eat very small portions. He was having visual hallucinations but no longer mentions these. We are not getting a straight answer from the nursing home staff, some seem to think this is the end whereas others say not to give up on him just yet. As a family we would prefer to know so we can try to prepare ourselves. Has anyone else had any experience of this stage? We dont expect him to get better but is the end likely to be soon?


#2

I have just joined the forum and exploring the site...came across your unanswered question. You have probably had the answer by now with what time played out for your Dad's story. I supported my mother through her end of life. Hope things were peaceful...your unanswered question has been in my thoughts.


#3

I don't suppose they really know. He has a healthy appetite so seems to want to keep going himself. My husband has had Parkinson s for twenty years but the last few months have seen a marked decline. He can do very little for himself but can walk a bit though a struggle. He has dementia now and gets very confused and has many hallucinations, which can be quite unnerving at times. Creepy almost. He is very weak and finds most movement difficult. Like your father, it is hard to tell what he is saying but unlike your father, he isn't really interested in food, except cake and chocolate! i have heard of an energy drink that is supposed to help when swallowing becomes difficult. I am still caring for him at home but it is getting harder to do so. The doctors have told me he is at the advanced stage and do not want him to go into a home until he reaches the palliative stage but have given me no guidance as to what that will be like. It is very hard watching them decline. You have my sympathy.


#4

Hi SusieSnowdrop,

That sounds like a hard situation. You mentioned not having guidance about palliative care, we have things about it on our website which may be helpful if you're looking for more information.

Best wishes to you and your husband,
Alethea
Digital Team


#5

My husband died in March. He had Parkinson`s and dementia.   He deteriorated very obviously after Christmas, sleeping most of the time.  When he no longer wanted to be hoisted out of bed into the bathroom for the toilet and a wash we knew things were running down.  He spoke much less if at all.  If someone held his hand and talked to him just one-to-one it gave him pleasure although response was mostly from his eyes.  He got  a chest infection which I think must have been due to his lack of movement and shallower breathing.  Antibiotics cleared his chest but he had lost a great deal of weight and then died peacefully in his sleep.

He was offered the high energy drink but refused every flavour.   He was happier with milk or water via a syringe.   We turned his head to one side so the drink formed a little puddle there and then he could swallow it when he was ready.  Then he needed a drip.

I hope this will give you an idea of what the end was like for one sufferer with PD., gentle and peaceful.

To help you: - occupational therapy arranged for a hospital bed in our living room with a hoist.  I no longer used any pyjamas.  He had incontinence pads and a top open at the back.  He had his arms in the sleeves and the rest was just laid over him in the bed to preserve his dignity.  I put waterproof covers on pillows so they could be used behind his back to prop him on his side and between his knees to prevent pressure sores.  I turned him often and he had no pressure sores at all.  I was able to talk to the GP about end of life care so I knew what to do.  By then I had a carer coming in to help with the morning routine and at night to help with the bedtime routine.  For the rest I could cope on my own.

My best wishes to you and your husband, if your experience is like mine you have nothing to fear.

Hattie

 

 


#6

Thank you for your letter. I hope it wasn't too hard for you to write it. Did you only have two caring sessions? You did so well. I am sorry for your loss but it sounded peaceful and without pain for your husband. I found your email very helpful. I am trying to make the house easier to manage for us both but have opposition from husband - he seems to think we can carry on as normal. He threatens to kill himself. I realise he isn't at that stage yet but each week seems another step closer. Did you have any respite at all? To be honest, I do find the physical caring difficult. I have had cancer and the chemo left me with damaged joints so I have had a hip replacement too. Lifting my husband from chairs and car etc. is really hard. We have had several falls. Any tips to help lift, turn, feed etc would be very welcome. 

with thanks and best wishes,

susiesnowdrop.

 

 


#7

Good morning SusieSnowdrop

We all have to manage as best we can and you have difficulties of your own that I didn`t have.  I`m fit and extremely healthy and OH was not very heavy, my children live nearby and were both willing to come in if necessary.  I found that all sorts of people were willing to help if I asked.  Anything from shopping to `please pop in for a chat, he`s very lonely today`.  We have a local volunteer group who would sit for up to two hours, collect a prescription etc all for a donation to cover the cost.

The first point I would make is that you should register as a carer with your GP.  Second, if you are ill or injured you can`t help your OH so get your GP to get an occupational therapist and the social services involved so you get professional advice on what suitable help and aids are available.  Sleep whenever you can because tiredness makes everything depressing.

At different times we used a wheel chair, two hoists, a raised toilet seat, a bath lift, support rails in the bathroom, a slide sheet (to help us move him around in bed), a hospital bed with raise and lower facility for the head and foot.  I saw a physiotherapist who explored what physical help I provided, how I carried it out and then advice on the best way to do it.  We had the bathroom door re-hung to be a swing door but then had to dispense with it altogether because it prevented the use of the wheel chair.  We have a ramp at the front door.

Eventually we allowed OH`s facial hair to become a stubble beard and I bought a stubble trimmer to maintain it for him after initial visits to the local barber.  I got an electric tooth brush so I could clean his teeth for him.  A podiatrist suggested a strong file so I could do his toe nails.  I found OH enjoyed the gentle handling of his feet so sometimes I gave him the extra pleasure of massaging them with hand cream.

Years ago we had both done Power of Attorney so we knew that OH did not want a care home nor to die in hospital. Of course this was invaluable at the end but before then it enabled us to talk about accepting aids and help so that I could help him stay at home. 

You are entitled to a carer`s assessment to see what help, respite you need and how it can be arranged.  You can access this via your GP.  Living in your situation means you are constantly adapting to your husband`s needs and health so don`t be afraid to go back to the GP etc if their help is no longer appropriate and they can suggest something else.

I hope this isn`t too much at once.  Don`t feel guilty at what you can`t do just glad for what you can  do. Nobody can do it all.

Love

Hattie


#8

Thank you for your letter. I hope it wasn't too hard for you to write it. Did you only have two caring sessions? You did so well. I am sorry for your loss but it sounded peaceful and without pain for your husband. I found your email very helpful. I am trying to make the house easier to manage for us both but have opposition from husband - he seems to think we can carry on as normal. He threatens to kill himself. I realise he isn't at that stage yet but each week seems another step closer. Did you have any respite at all? To be honest, I do find the physical caring difficult. I have had cancer and the chemo left me with damaged joints so I have had a hip replacement too. Lifting my husband from chairs and car etc. is really hard. We have had several falls. Any tips to help lift, turn, feed etc would be very welcome. 

with thanks and best wishes,

susiesnowdrop.

 

 


#9

Hi Susie Snowdrop[,

 

Just a little added comment to the bove valuable advice, not all GP's are as clued up as to their duty towards carers as they should be carers rights s they should be be. so don't hesitate to  to contact the Adult Care Services (or whatever they mmay be called) directly if needs be..It took two or three years before my efforts resulted in my surgery finally grasping that they should be maintaining more than a token list of carers and referringb oeople on to the appopriate services.

Quote from NHS choices 

"Contact the local authority and ask for an assessment for the person you look after, as well as a carer's assessment to help you. For advice and guidance on moving and handling, ask for an occupational therapy assessment.

You may be given free specialist equipment to help you, such as hoists, stand aids, transfer boards or slide sheets. You may also be able to find free training courses, which will teach you safe handling methods."

Services do vary from area to area, e.g. in my county you are not supposed to gad about enjoying yourself in a wheelchair - strictly for indoor use - whereas in other areas you either need a wheelchair or you don't

My county certainly do free handling courses which were unavailable many  years ago when I looked after my mother.  The recent care act reinforced the obligation for authorities to do carers' assessments, i.e. assessment of the carer,s needs which means you get someone to help you think through  what your needs might be and provide relevant information  even if you don't qualify for the ever more strict criteria for free services.  Although  my guess would be that you do, at least with regards to practical aids such as hoists etc. as you sound as if you should be eligible 

 

Best wishes 
 


#10

Hello everyone,

I haven't been on here for some time but I wanted to let you know that my husband died on monday after a almost forty years struggle with this very difficult condition. He was determined to live life to the fullest he could and kept us busy supporting him the best way we could. He was a member of the old Yapper's group and then we started the North West Somerset branch with a few other people in 1993, we have a lot of happy memories of sharing our lives with other people with Parkinson's and will have a celebration of his life followed by a good send off with music from the Rolling Stones his favourite group. I would like to thank the many people who have supported us on the forum. God Bless you all Vivian (Dorothy Close)


#11

Hi Dorothy

I am so sorry to hear that your husband has died.

I know from your posts that he became very ill towards the end and that you did everything you could to make life more bearable for him.

I am sure you will miss him terribly and it is little comfort to know his suffering is finally over.

He was blessed to have a wife like you and I hope the celebration of his life with family and friends helps you to come to terms with the life that is over and the new one you will be embarking upon .

Love

GG


#12

Hi Dorothy,

 

I can only second GG's words above.  Yours is an inspiring story of love and  determination in the face of your husband's condition, not to mention your own mobility problems 

All the best

 

Eileen


#13

 

Hi Dorothy my thoughts are with you at this time, it's so nice that you had such devotion towards each other and that you 'lived your life to the full' under such difficult circumstances. 

We all have our crosses to bear and I hope that I will take inspiration from your personal journey. 

Regards Sheffy


#14

Dear Vivian

I am so sorry to hear about your husband.  My sincere condolences and hugs.  I have been there. 

You have offered much support to others on here in the past (me included) and I hope you will get the support you need now. 

 Worrals

x

 


#15

Thank you all for your lovely comments, we shall have a requiem mass followed by refreshments with music from the Rolling Stones and people like Johnny Cash and a monitor with all sorts of his OH so many photo's and lovely poems rolling on through the celebration of his life. He was such a kind gentle man until the PD drugs kicked in and even up until the last his thoughtfulness showed as the three of us holding hands, he  pulled us tight together. Of course we are so terribly upset words can not tell but there is no way we would wish him to suffer any longer. When I checked the post on Tuesday morning the new stones cd had come and some more under pants, so at 4am I put all the lights on and had the cd blasting  bawling my eyes out good job we are detached.

I so wish I had the energy to campaign for better care for people with PD as it really is not good as some of  you will have seen by my posts, basic training to keep things like teeth clean which is only a small thing.but the home really didn't know anything about looking after PWP but they certainly do now. National office produce good publications, although they have stopped the best one The Professional's Guide to Parkinson's Disease utter madness I did ring up and have a go about it but as usual it didn't make any difference, but that is so not enough they need to spend time out with the grass roots to see how difficult it is.

I wish you all well on your journey and have courage you are amazing people.

Love Vivian


#16

I looked after my Mum for  her 10 years with PD. She died 2 years ago aged 91.....

We had lots of good times but sadly many very difficult ones and 'carer' was an exhausting role at times. I turned often to the PUK helpline and the website for help, information and support.

Now - I do what I can to campaign for better care, help with research and anything else that PUK puts out a request for help! Being an active volunteer has helped fill the big gap in my life now that Mum has died - but as you said about your OH, her death was sad but I couldn't have wanted her  to continue any long with the difficulties the progress of PD was causing her.

In time, you may find a role - ( they come in all shapes and sizes!) that  could be something you could do to help the campaign for better care.

Volunteering with PUK has helped me (as much as I hope it is helping PUK's work) - and is a way to use usefully the stories of when things don't go as it should for PwP!!  It is hard when the 'carer' role stops - others who don't understand think you can suddenly become a 'non-carer' but it isn't as easy as that!

Take care and hope the mass and the music help you through the next few days, weeks.

Keld :)


#17

Hi Keld,

 

On another thread today you posted about Citalopram.  I may be just me but I cant  access your  post

Moderators please note.


#18

It has disappeared  from my list too! 

 


#19

Hi there! I have just re-read my post on the thread called Citalopram so it is there!! it is the 3rd post in that thread. I wrote it and then edited it so maybe that is when is diasappeared?

Keld