Last stage and hallucinations

[Vikkiberry]

Hey all,

My 1st post so bare with me, my nan has had dementia for 10 years (that we have known) my grandad has done an amazing job caring for her at home by himself, they asked for help but at the time she was able to give any and all answers so she wasn’t entitled to help. They we’re not interested in what my grandad had to say about how she was and as time went on it was a real struggle to get her in to any appointments so my grandad ended up just doing it on his own. I and a few other family members helped as much as we could but in these later stages she gets anxious and doesn’t want anyone around her who she doesn’t know/remember.
She is in the last stage and has been for a while:getting out is difficult and she has had many falls, getting her to eat and take her medication is a daily struggle and the toilet control is completely gone.
My question is she has started having quite serious hallucinations (she nursed a pillow for 6 hours the other day thinking it was her baby who had passed over 30 years ago, she often sees people around the home and gets cross with whatever they are doing/saying. Is this part of the last stage of Alzheimer’s/Dementia or something different?
And has anyone got any advice on helping my grandad I visit every week and bring the kids who used to bring her joy but I think are just noises now but my grandad loves seeing them so I couldn’t go without them.
Thanks for reading any advice would be appreciated

 

[karaokePete]

Hello @Vikkiberry, you are welcome here and I hope you find the forum to be a friendly and supportive place.

I don't have an answer to your specific question as everyone experiences dementia in their own way. However, I hope you can take a good look around the site as it is a goldmine for information. When I first joined I read old threads for information but then found the AS Publications list and the page where a post code search can be done to check for support services in ones own area. If you are interested in these, clicking the following links will take you there

https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

https://www.alzheimers.org.uk/find-support-near-you

You will see that there are Factsheets that will help with things like getting care needs assessments, deciding the level of care required and detailing the stages of dementia etc.

Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.

 

[la lucia]

Hey all,

My 1st post so bare with me, my nan has had dementia for 10 years (that we have known) my grandad has done an amazing job caring for her at home by himself, they asked for help but at the time she was able to give any and all answers so she wasn’t entitled to help. They we’re not interested in what my grandad had to say about how she was and as time went on it was a real struggle to get her in to any appointments so my grandad ended up just doing it on his own. I and a few other family members helped as much as we could but in these later stages she gets anxious and doesn’t want anyone around her who she doesn’t know/remember.
She is in the last stage and has been for a while:getting out is difficult and she has had many falls, getting her to eat and take her medication is a daily struggle and the toilet control is completely gone.
My question is she has started having quite serious hallucinations (she nursed a pillow for 6 hours the other day thinking it was her baby who had passed over 30 years ago, she often sees people around the home and gets cross with whatever they are doing/saying. Is this part of the last stage of Alzheimer’s/Dementia or something different?
And has anyone got any advice on helping my grandad I visit every week and bring the kids who used to bring her joy but I think are just noises now but my grandad loves seeing them so I couldn’t go without them.
Thanks for reading any advice would be appreciated

Hi, it could be a progression of the disease but it could be something like a urine infection too. I think you need to call the GP for a home visit.

If they think it is a UTI don't let them suggest that you supply a urine sample (they're really hard to get when someone is incontinent). Ask them to organise getting the sample themselves. Ha!

But nursing an imaginary baby is not a problem, things like this are quite common and some shops even sell special dementia puppies (that breath) to cuddle and stroke.

It sounds like time your grandad got more support. Call social services and ask for two assessments: one for your grandma and a Carers Assessment for your grandad. The latter might not help much - they vary from area to area. But your grandad would probably benefit from some help and don't let your grandma's behaviour put you off seeking help.

If the problem is not a UTI or infection then you can ask for a visit from the Community Mental Health team. Maybe she would benefit from some type of medication to help keep her calm.

But either way it sounds like your grandfather has been doing an amazing job but he must look after himself too and maybe having carers to visit and help would be good.

 

[Rosettastone57]

Hey all,

My 1st post so bare with me, my nan has had dementia for 10 years (that we have known) my grandad has done an amazing job caring for her at home by himself, they asked for help but at the time she was able to give any and all answers so she wasn’t entitled to help. They we’re not interested in what my grandad had to say about how she was and as time went on it was a real struggle to get her in to any appointments so my grandad ended up just doing it on his own. I and a few other family members helped as much as we could but in these later stages she gets anxious and doesn’t want anyone around her who she doesn’t know/remember.
She is in the last stage and has been for a while:getting out is difficult and she has had many falls, getting her to eat and take her medication is a daily struggle and the toilet control is completely gone.
My question is she has started having quite serious hallucinations (she nursed a pillow for 6 hours the other day thinking it was her baby who had passed over 30 years ago, she often sees people around the home and gets cross with whatever they are doing/saying. Is this part of the last stage of Alzheimer’s/Dementia or something different?
And has anyone got any advice on helping my grandad I visit every week and bring the kids who used to bring her joy but I think are just noises now but my grandad loves seeing them so I couldn’t go without them.
Thanks for reading any advice would be appreciated

My mother-in-law often had hallucinations . There was one particular occasion when she hallucinated that there was an unknown male at the foot of her bed performing a sex act resulting in the police being called after notifying care link. Needless to say when the police arrived there was nobody there and no evidence of anyone having been in the house other than her.

Then we had a young man with a baby who used to apparently turn up at the front door on several occasions and she would have a conversation with him. She never seemed particularly disturbed by these hallucinations . Eventually however she became more and more frightened particularly by the ones that she saw outside. She thought she saw a hedge outside on fire which turned out to be the flashing lights of a breakdown vehicle . Not easy to deal with

 

[Vikkiberry]

Thanks everyone for your replies,
I will have a look through the links kareokepete.
La Lucia, she often gets urine infections but they usually present with other symptoms but I will collect and dip a sample they can now supply a special cup which connects to those small bottles, the council in our area are pretty pants and my grandad doesn’t want the hassle of chasing them to follow up with them unfortunately. If it was my decision they would have had support and help a long time ago! It’s a real struggle and most of the time she doesn’t take the medication they have prescribed already so I’m afraid that’s not an option.
Rosettastone57 that sounds familiar, she seems to be living in her past (that wasn’t pleasant) and it’s coming to life around her again sadly, if you don’t mind me asking was it towards the end? My grandad is really worried the end is coming, makes me sad but it is inevitable I have been googling but it seems different for everybody
Thanks again everyone

 

[LynneMcV]

Hi @Vikkiberry,

I am sorry you are going through this ordeal.

Re. the hallucinations, these were part of my husband's symptoms and reared their head several times over the years, so in his case, they were not linked to the end stages.

Generally they were triggered by an infection of some kind - most commonly a UTI but also mild chest infections or some other unknown infection could trigger them off and antibiotics quickly resolved the matter. However, there were hallucinations and delusions which sprung up simply as a result of the dementia progressing too, and as a result he had several tweaks to his medication to help keep things on an even keel.

Of course this only helps for as long as our loved one is compliant in taking the medication. Towards the end stages my husband had to be given meds covertly (hidden in drinks, yoghurt etc) but eventually his desire to eat or drink disappeared and so he benefited very little from what medication was received sporadically.

 

[Rosettastone57]

Thanks everyone for your replies,
I will have a look through the links kareokepete.
La Lucia, she often gets urine infections but they usually present with other symptoms but I will collect and dip a sample they can now supply a special cup which connects to those small bottles, the council in our area are pretty pants and my grandad doesn’t want the hassle of chasing them to follow up with them unfortunately. If it was my decision they would have had support and help a long time ago! It’s a real struggle and most of the time she doesn’t take the medication they have prescribed already so I’m afraid that’s not an option.
Rosettastone57 that sounds familiar, she seems to be living in her past (that wasn’t pleasant) and it’s coming to life around her again sadly, if you don’t mind me asking was it towards the end? My grandad is really worried the end is coming, makes me sad but it is inevitable I have been googling but it seems different for everybody
Thanks again everyone

Hi @Vikkiberry my mother-in-law started the hallucinations quite early on a few months after she was originally diagnosed in 2015. She was diagnosed with mixed dementia both Alzheimer's and vascular dementia and the hallucinations started initially as small boys dressed in white coming into the back garden. We weren't sure at the time this was some sort of memory from the past we never really got to the bottom of it. The hallucinations progressed to her seeing spiders in the bedroom and even when she went into the hospital the same hallucinations continued. When she went into a care home as well she began to see all sorts of people and spiders and other creatures she was tested for urinary tract infection but was always clear . I'm afraid to say that these sort of things comes with the illness. So no in answer to your question my mother-in-law did not have hallucinations at the end of her life they had begun at least 3 years before she died. Everyone with dementia is different and the progression varies from person to person