Dad with Communication Issues Now In Care Home

My Father is 84 with Parkinsons and at the beginning of 2020 was living at home together with my mother with daily help provided by home carers morning and evening. His condition and symptoms have worsened, the dyskinesia has increased and his communication has become very poor. Following increasing freezing episodes at home resulting in 999 calls in some instances, one of which resulted in admission to hospital in February this year as he was found to have a water infection. While in hospital his ward was isolated due to vomitting bug (which I brought home too following a visit) for two weeks. To cut a long story short (if I can!) we all wanted him out of the hospital environment as soon as possible but the only solution was for him to be moved from there to a nursing home (my mother was unable to cope with him at home and we were getting knowhere getting him sufficient help at home). While my father resisted moving to a nursing home, he did accept it and he has received the availability of 24hr care which he needed. We spent a lot of time making sure his room was personalised and comfortable moving in a lot of his furniture from home etc. We also ensured that we visited him on a regular basis.

Move forward to today and we have all had to deal with Covid-19. We have been unable to visit him within the the home since April and have had to resort to phone and FaceTime. However, his communication is so poor we all struggle to understand him at all. If we manage to understand 20% of what he is trying to say that would be a major success. We can see how visibly frustrating it is for him as well as us and the care home. We could help when we were able to go into the home and to his room. I feel bad to say that I personally dread taking a call from him as I cannot understand most of what he is trying to tell me. We have produced some laminated flash cards (which his SALT advisor said were better that what they could provide!), I’ve also tried setting him up with numerous speech apps on his iphone (another subject altogether). He appears to find it difficult to use any of these despite encouragement as motor functions are quite poor. Wierdly, he struggles even to respond with a yes or no to simple questions. My brother and I are very patient with our father and do take a lot of time trying to understand him. Unfortunately, my mother’s hearing is getting quite bad (even though she thinks its fine). So combine this with my fathers communication and you can only imagine…

All the way through this we have consulted with his Parkinsons Nurse, the SALT (Speech and language therapists) and the care home. There just appears to be very little that they can do. In fact the tools and advise provided by SALT have been next to useless I’m afraid. Plus now with covid-19, no-one will go to see him in the home so he’s on his own. He does have a Lasting Power of Attorney set up for Health & Welfare which we do not know how to use/activate - I thinks that’s our next step as we are increasingly having to speak for him.

We do send small packages into him each week with cards and pictures which he appears to appreciate. Other than that we all feel so helpless and do not know how else to help.

Hi @jread welcome to the forum.

I’m so sorry to hear about your difficulties with your father’s communication challenges. It sounds like you have tried numerous things to support him.

If you want to chat about anything you have experienced with your father, including considering lasting power of attorney, our adviser team are there for you on 0808 800 0303.

Best wishes
Katie
Forum moderation team

Hello what a difficult and distressing situation for everyone. Have you looked into technology options, sorry but I don’t know how you go about getting such things but there may be something that can help. Not necessarily for your dad but I have known people communicate by using tech devices and eye blink and technology is developing all the time. I also vaguely remember reading an article on something which if memory serves me right is called tippy talk don’t recollect exactly what it is, I wasn’t particularly concentrating at the time but may be worth looking into. In the meantime don’t be too hard on yourself it seems to me that you are all doing all you can and you are persevering - so many give up because it is hard work for everyone incl your dad. Telephone calls are particularly hard as you don’t get the nonverbal cues but if you can set it up maybe you could use Skype or zoom so you can at least see each other. Or what about sending in recorded ‘letters’ he can listen too and maybe this could include things you know are going on in the care home. I know it is not conversation but it might be nice for him to have your letters to read again when you are not around. Maybe get the care home to give you a weekly phone call with generally what has been happening that your dad may have been involved with indirectly another resident’s birthday for eg or something funny that happened or perhaps an unplanned singalong - singing or speaking with a singsong voice can be a great help in communicating - that will enable you to take conversation to him, knowing or even having some idea of the subject can be half the battle. I feel a bit helpless to give you anything more or indeed anything different to what you have already tried but maybe there is something that will at least set you off on a new path to try. I wish I could offer some magic solution but I will have to content myself with sending my best wishes to you all, good luck.

Just thought I’d mention something that a friend with MND told me this week. His speech is getting quite poor and he couldn’t make his wife understand what he wanted. The speech therapist told him that it was to do with his brain working faster than his ability to formulate words. In desperation he started speaking with a Scottish accent which slowed his brain down and lo and behold his wife could finally understand him. I don’t suppose for one moment that it has to be a Scottish accent, it could be another language which helps to slow the process down. Worth a try if your father is capable of understanding what you want him to do. The PUK shop does a voice amplifier which does what it says on the tin but he would need to be able understand how to operate it.

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What an interesting idea, my view is anything is worth trying.

Has your Dad been seen by a neurologist recently, not just the Parkinsons nurse? Maybe his medications may need some adjustments even if only helps a little? Does your Dad respond to music and songs, is he able to still write atall ? It all sounds very stressful for you all, it does sound like you are trying all avenues open to you - I hope you find something that helps you all soon and hope too that easing of Covid restrictions will at least help you visit face to face again before long. Best Wishes

So disturbing to you and your family. As he has had one major cause for confusion - a urine infection- this and other medical causes- need treating such as kidney failure or dehydration via the GP - with good wishes, David

Hi, I totally feel your pain and suffering.My Mother of 82 is in a nursing home and has virtually no communication. If she does manage to speak her voice is so quiet we cannot understand and have to try and interpret with little bits we get. Mum then gets frustrated and sometimes rolls her eyes.It’s so painful to see.
We were given one video call a week and the carers would hold the phone because Mum is bedridden and little mobility left. Mum also has a level of dementia linked to her Parkinson’s so does not really comprehend what is happening which in a way is a blessing.
Then five weeks ago we were allowed to visit once a week for 30 minutes and 1 visitor.There are 5 children so we got 30 minutes every 5 weeks.
That has been stopped again today and have to go back to the dreaded video call which I totally agree when you said dread the call.It for me feels like torture seeing Mum and not being able to be there for her by talking/singing to her and holding her hand.
I joined today to talk to others going through this dreadful situation.

Hi @snowpatrol1, :wave:

Welcome to the forum. :slightly_smiling_face:

My thoughts go out to you and your family, I can’t begin to imagine what you all have been going through, especially in light of Covid-19. You’ve definitely come to the right place for support and I’m sure you’ll make friend here in no time.

In the meantime, if you need to speak to someone, we have a team of friendly and helpful advisers via our confidential helpline team who you can contact for free on 0808 800 0303 Monday-Friday: 9am-7pm, Saturday: 10am-2pm
(Closed Sundays/bank holidays).

I hope you find the forum helpful and please note that we are here to help you in any way we can.

Best wishes,
Reah
Forum Community Manager