Please, please help


#1

I am really at my wits end. My husband (49) has been diagnosed for 10 years now. The last 2 years he’s lived in a care home.
1 month ago I went to see him and a gp was with him. The home had called her to say they were concerned at his rapid decline - he’s no longer very mobile (when he is helped to stand he leans back so needs someone behind him to help him walk ) and his head seems always down. He is asleep mostly, although very twitchy when asleep, and mumbles. His delusions are significant and he has far more distant days now than lucid.
The gp told me she felt he was now in the final stage of Parkinsons and would give him 6 months (although she said physically he is fine).
I went today and when he raised his head he was sobbing. When I managed to get a clear enough sentence from him, he said someone had told him our middle daughter had died. I have never seen him so distressed.
I called my daughter and she came around to see him, by which time he’d nodded back into semi consciousness and was mumbling again.
In the 2 hours we were there, he only raised his head 3 times, and even then his speech was poor and difficult to understand, but what he was saying was bizarre.
My question is, is this final stages and if so, what can we do to support him further?
Also, my daughters are 22, 19 and 15. How can I help prepare them?
His next appointment with the consultant is not until next month, despite us calling each day for a cancellation.
Please, please, has anyone any advice?


#2

Hi @MEY,

A warm welcome to the forum.

I am so sorry that you and your family are having to go through this - I can’t imagine how heart-breaking this must be for you all. Unfortunately, hallucinations and delusions usually happen in the later stages of Parkinson’s. They can affect both younger and older people in the earlier stages of the condition, but this is less common.

It’s really difficult to give you a definitive answer on this because Parkinson’s affects everyone differently, however, if you are not satisfied with his GP’s advice, then you may want to consider getting a second opinion. In terms of how you can get your daughters prepared, we have a lot of information on the kind of emotional support and counselling that’s available to you and your family, including counselling and information and support centres. You can find this here - https://www.parkinsons.org.uk/information-and-support/emotional-support-and-counselling

We have a team of supportive advisers via or helpline that you can also contact if you need additional support on this. Please give us a call 0808 800 0303 from Monday-Friday: 9am-7pm, Saturday: 10am-2pm, or you can email hello@parkinsons.org.uk. Please bear in mind that we are closed this Sunday and bank holiday Monday, however, you can call us this evening or tomorrow if you choose.

My thoughts are with you and your family.

Best wishes,
Reah


#3

Hi @Reah

Typed a message that @MEY and seems it has gone to the wrong page. Proberbly my fault Is there anyway you could redirect. Sorry


#4

Thank you for your response and the links attached. It’s just unbearable to watch him like this; his brain is torturing him. He had DBS 4 years ago this month and I am at a loss how to deal with the current state of affairs. Thanks again.


#5

Hi @Jchilton,

No problem. Please let me know which thread you’d like me to delete your comment from and I’ll get this done for you.

Best wishes,
Reah


#6

I can’t tell you how sad your note makes me. My Mum was diagnosed over 30 years ago and she is only just in stage 3, but she has all the hallucinations, stomach problems, bad dreams, etc and now the onset of dementia. This (dementia) is very quick moving and her speech is now affected badly and she dribbles a little. However, the family (niece, nephew and ex daughter-in-law) don’t understand and keep worrying me to put Mum into a home. I can’t do that as she doesn’t want it herself. Also I notice that in stressful situations her Parkinson’s symptoms are worse and in some cases last for several days when she feels extra ‘wobbly’. Could it be that in the home your husband is feeling ‘detached’ from family? My Mum will have me just sit with her for hours on end and sometimes she does none of the talking! Can this be of some significance to your husband? I know that Parkinson’s affects people differently and individually but perhaps some of the effects are the same for all? Mum also carries her head down, she has lost interest in most things except going shopping but this is just so that she is with me I think, and sometimes her hallucinations are so real that she actually will see things like fire engines in her room, or people peering at her. I’ve popped into her room most times when she has a nightmare in case she falls out of bed or injures herself and often have to spend a little time soothing her down again afterwards. I find that without my constant attention and loving care she seems unable to ‘find herself’ and she begins to react and show more symptoms of being insecure.


#7

Thank you for taking time to post a reply. My husband is most definitely depressed, and is medicated for that too, but without going into too much detail, sadly there was no other option than for him to enter the care home. He does however have a visitor most days in either me or my 3 daughters.
I feel his brain is torturing him at the minute, and I’d do anything to help him.


#8

I wish there was something constructive I could say that would help you at this most distressing time. My heart goes out to you and I hope you are able to get the support you all need. It is not much but all I can give, much love and hugs from me to you.


#9

@MEY I’m sorry that all of this is so upsetting for you and your family. We were told my mum was in the final stages of Parkinson’s 2 years before she passed away. I don’t see how your husband’s GP can say he only has 6 months. I believe everyone’s final stage will be different. My mum had a stroke which perhaps quickened her decline. She too was in a nursing home and was lucky enough to have my father sit with her for up to 7 hours a day. When she was awake, she always knew he was there but couldn’t communicate with him, but when she was asleep it gave my father comfort knowing that he was there for her in case she woke up. Time spent with your husband, for you and your daughters, will be prescious now. My advice is to try and spend as much time as possible with him and talk, talk talk. Even though he may look like he’s sleeping, (as I discovered with my mum) he will still be listening to your voice and your news. Take care and I know it’s difficult but try to stay strong.


#10

Hi MEY, I’m so sorry to hear about your husband, I was diagnosed 8 years ago & haven’t a clue what stage I’m at? You say your husband had DBS 4years ago? Have the settings or battery been checked? I had the op last year & it improved my life immensely. I know it effects people in different ways but it might be worth a check. There should be a mobile device that came with it which should tell if the stimulator is on. PD is a horrible disease & can be a lonely one but with family and friends support it helps immensely. It might be an idea as someone else mentioned to get another neurologist to give a second opinion or even change your neurologist ask his doctor. Check the hospital website to see which neurologists specialise in PD (some don’t).
I wish you, your husband & all your family good luck for the future.


#11

Thank you for the comment. His battery is one which is permanently on, and as he doesn’t leave the home, it’s unlikely that it’s switched off, but thank you for saying. I really wish Mike’s DBS had helped him as significantly as yours has - long may that continue for you. The Parkinson’a nurse is phoning tomorrow, so hopefully we’ll get some further advice then too.


#12

Hi again MEY, I’m glad the PD nurse is coming to visit your husband tomorrow they are invaluable. I hope she can improve his situation.