I have posted on here many times and appreciate the responses. I’ve been caring for mum for 2.5 years. I gave up my job to help her. In the last month she has declined quickly - she can no longer stand straight or up and transferring to a wheelchair is very hard. She can no longer walk with the walker. I can’t get her to the bathroom to wash. Her swallowing has become difficult with water/fluids and food and her bowel movements have slowed right down. We have had the rapid response nurse out and she doesn’t have a uti, her blood pressure has been low. I have had to increase care visits to two carers for an hour twice a day. We don’t have room for equipment, mum even when she was walking always wanted to sit in bed.. She also does this thing in the last month where she keeps closing her eyes (altho she isn’t asleep) and is not engaging with us when we speak, either closing her eyes, or looking around but not at us. She used to be fine. It is Xmas day today and she just didn’t engage much when her grandkids and I visited. It was upsetting.
Mum is at a home for respite care at present for two weeks. I visited today and can see she has really gone downhill. I am considering her staying permanently as they can move mum around and now care for her better than I can. They are moving her with a hoist . The staff are very good and don’t want to risk leaving and trying to get her in again.
Are we at stage 5 of Parkinson’s, in people’s experience, will the decline continue quite fast. She is 87.
Any advice on these changes, is PD progressing very fast?.
Hi @Mum101, thank you for sharing this, and we’re really sorry you and your mum are going through a difficult time. What you describe sounds hard, especially after caring for her for so long.
Parkinson’s can progress unevenly, and changes can sometimes happen more quickly, eg. with mobility, swallowing, and alertness.
Choosing permanent care is an important decision, and it sounds like you’re making it from a place of love. Being somewhere she can be moved safely, and supported around the clock can sometimes be the kindest option.
It might help to speak with her Parkinson’s nurse or GP about what you’re seeing now, including swallowing and alertness, and to ask about what support should look like at this stage.
It’s also important to look after yourself, as a carer, and finding what support you can receive. We have information about this here: Getting support as a carer | Parkinson's UK
We’re thinking of you and your mum, especially today.
Hello, sorry to hear of your sadness with your Mum and her decline. I feel only her Doctor and or Parkinson’s nurse can answer what stage your Mum is at. I can say that each time my husband with Parkinsons has had to go into hospital his mental capacity declines and that impacts him greatly, physically & mentally. If your mother is currently in a respite home is she being medically monitored there ? Have you asked her what she wants, will she/can she tell you ? How long is it since she has been in her own home, maybe she just wants to go home?
My mother who didn’t have Parkinsons died Sept 2024 and for the last 6 months of her life (in her own home) she would often close her eyes because she said she was weary. She was also exceedingly deaf and had difficulty concentrating with people especially when there were chatting grandchildren visiting.
I hope with some more medical input you’ll achieve some answers and feel able to make the right decision for you both. It isn’t easy, I do wish you both well. Jane
Hi, we decided to bring mum home and increased the care. Mum is bedbound. With help of the carers we get her in to the wheelchair but she is also very rigid at times. Her swallowing issue has happened on and off but now is only having yoghurt and ensure milkshakes. She is chewing but can’t swallow - weirdly even soup she struggled. She can take her medication with water, no issue. The SALT therapist will come out next month. Mum has declined so much and so quickly from November. Do we just expect the decline to happen quickly. At our last appointment in Jan, the doctor told me to get the LPA’s arranged.
Hi, things have really changed for my Mother. She is now unable to stand and is bedbound. She has a difficulty with swallowing food (I have started liquidising it but weirdly tablets and water are ok), so the GP has given ensure milkshakes. She is disengaged and withdrawn a lot. Her body is rigid, we try moving her in the day and cushions but now the district nurses are visiting for bedsores. I am just not sure what to expect, I know everything is in decline. Should I be thinking about hospice care. Things feel like they are declining so fast. Any thoughts
Hello @Mum101, thank you for updating us. That must be really hard for both your mum and you and your family. We’re glad you’re getting help from your mother’s GP and have district nurses coming round to support. Watching someone you love and care about decline can be really difficult. You don’t have to navigate this alone, and we’re here for you.
We have support around preparing for end of life, that’s not to say this is happening soon, but thinking about the future now may help you feel more in control about what lies ahead: Preparing for end of life | Parkinson's UK
We are also at the end of the phone. You can call our free confidential helpline Monday to Friday 9 am to 6 pm, and Saturday 10 am to 1 pm. Our trained advisers, including specialist Parkinson’s nurses, can provide information and advice to help with your mum and how you are feeling.
You may also find it helpful to talk to family members or friends or reach out to a trained counsellor or faith leader. We have information on the type of help that is avaliable to you on our website: Emotional support and counselling | Parkinson's UK
I am writing this with a heavy heart. I have felt my mum has been declining for months and I have been helpless . The GP just prescribed meds and milkshakes, the Parkinsons unit at the hospital took days to respond to a message I left and said they will visit in April and to go to the GP in the meantime. The District nurse has visited twice. The only support I received a week ago was from the lovely Parkinson’s charity. Reluctantly the GP, from a phone discussion said they would refer me for palliative care but that it is in crisis with no staff and would be rejected. Anyway a hospice nurse called 5 days later. It took the wind right out of me when she said “hospice” nurse on the phone. As I expected, but what the Parkinson’s unit would not deal with or support is that my beautiful Mum is at end of life. They asked the GP to come today and she concurred the same. The hospice nurse said to stop meds. I’ve been able to replace half sinemet with sinemet and crush and give with a spoon and water. If anyone knows, how does a person get affected by stopping meds like that.
I feel desperately sad but in a weird way I feel calm as I finally understand what is happening and will be supported.
For any other family carers, please trust your instincts and ask questions and seek help.
Hello @Mum101 we’re so sorry to hear of the loss of your mum. We’re sending our thoughts to you and your family. We hope you’re surrounded by people who love you and are looking after you.
We are here for you too. We have information on coping with bereavement, including links to wider support on our website, which you might find helpful: Coping with bereavement | Parkinson's UK
If you or your loved ones are finding things difficult, you might find it useful to contact your Parkinson’s nurse or GP, who will be able to put you in touch with a local organisation that can offer you support.
Mum101 sincere condolences to you and all your family at this sad time. From what I have read of your posts, you did the very best you could by her and I like to think somewhere deep inside she knew that.
Hi @Mum101 I’m sorry to hear the sad news about your Mum. My own Mum is on a severe decline, being bedbound and requiring care around the clock. You were a loving daughter and were there when your Mum needed you. May she now rest in peace x
Thank you for your kind messages. I did my best and I have no regrets. Just trying to piece my family’s life together again. My kids who helped me care for Mum have been so strong and they amaze me every day. That gives me real comfort.
Sorry to hear about the stage you are at with your Mother. Make whatever memorieS you can, I spent days holding mums hand and “dancing” and singing the music she loved. My mother was a strong lady and I know her strength is with me. Please get the support you need as I feel it was all so lacking for us. I was chasing my tail alot of the time towards the last 6 months which was distressing. Wishing you all the best and strength for what will come ahead.
I am here for you if you would like to speak on here.
