Hello, I'm new on the site. My mum, age 89, has been living with vascular dementia for the passed 5 years and she is now in the later stages. She was also recently diagnosed with mixed dementia, now having Alzheimer's as well. She lives at home with my dad and between the two of us we care for her. To date we've had no help but since my mum fell 5 weeks ago her dementia has become much worse and so I think we're at the point where we're out of our depth. She broke her wrist and her shoulder and was in plaster for 4 weeks. The plaster came off last week but she seems to have gone downhill fast since then. She is sleeping up to 20 hours a day, her appetite is very poor and we're having a job to encourage her to eat even a little bit of food, although we have managed to give her a daily ensure so far. We called the paramedics a few days ago as she seemed almost comatose. We went to hospital and all her vitals were good and the blood tests showed no problems. While we were in the hospital she woke up and seemed much better. She managed to bare her weight when the physio stood her up and she even managed a few words. We were sent home where she immediately reverted back to sleeping all the time, hardly eating, being unable to stand or bare her own weight and saying very little, although when she is awake she still manages a smile and squeezes our hand. I'm at a loss to understand what is going on. She's also beginning to have a problem swallowing. We've set in motion a visit for a care needs assessment as my dad is finally admitting we need a little bit of support. Has anyone got any tips or information on the swallowing problem as this is what worries me most. And also tips for caring for someone at home in the later stages. Thank you.
Feeling out of my depth!
- Thread starter melb
- Start date
Hello, @melb, and welcome to Talking Point. I'm sorry to hear of your mother and that you needed to find your way here. Falls and fractures can be very serious and I am so sorry this has happened to your mother.
I would say you and your dad need more than just a little help at this point (surely just toileting and hygiene and physical care are wearing you out?), but am glad you are reaching out. I will have to defer to the UK experts here on TP to guide you through the process, but please don't be afraid to speak up and ask for an urgent referral, as you need help sooner rather than later
One thing you should ask for urgently (I think via your GP, but others here will know) is a SALT assessment, as you say your mother is having trouble swallowing/eating. The SALT team (speech and language therapy) are the professionals who deal with this issue.
Yes, dementia can and does cause problems with the swallow reflex for many patients. Your mother may need a soft diet, thickened liquids, or other adaptations to help her to safely eat and prevent aspiration pneumonia.
You can find some information about this here: https://www.alzheimers.org.uk/info/20029/daily_living/10/eating_and_drinking
There is a lot of good information in general, on the Alzheimer's Society's website, if you are not already familiar with that.
Did your mother spend any amount of time in hospital or rehab? Did she have surgery/an op for the broken wrist or shoulder? Is she on any new medications, including pain medications? Any or all of those things, plus other issues, could be contributing to her current condition, and/or it could be a progression of her dementia. It can be really hard to know sometimes. Best wishes to you and your family and please don't hesitate to ask questions and keep posting here on TP.
I would say you and your dad need more than just a little help at this point (surely just toileting and hygiene and physical care are wearing you out?), but am glad you are reaching out. I will have to defer to the UK experts here on TP to guide you through the process, but please don't be afraid to speak up and ask for an urgent referral, as you need help sooner rather than later
One thing you should ask for urgently (I think via your GP, but others here will know) is a SALT assessment, as you say your mother is having trouble swallowing/eating. The SALT team (speech and language therapy) are the professionals who deal with this issue.
Yes, dementia can and does cause problems with the swallow reflex for many patients. Your mother may need a soft diet, thickened liquids, or other adaptations to help her to safely eat and prevent aspiration pneumonia.
You can find some information about this here: https://www.alzheimers.org.uk/info/20029/daily_living/10/eating_and_drinking
There is a lot of good information in general, on the Alzheimer's Society's website, if you are not already familiar with that.
Did your mother spend any amount of time in hospital or rehab? Did she have surgery/an op for the broken wrist or shoulder? Is she on any new medications, including pain medications? Any or all of those things, plus other issues, could be contributing to her current condition, and/or it could be a progression of her dementia. It can be really hard to know sometimes. Best wishes to you and your family and please don't hesitate to ask questions and keep posting here on TP.
Hi @melb so sorry to read about your Mums fall and injury. My Mum did the same and managed to do wrist on one side and shoulder on the other.
I’m disappointed and cross if the case is that hospital didn’t bring in social services to arrange a care package for when she left hospital.
I would contact adult services at your local council and make sure your Mum is registered and a care assessment is needed now, assertively don’t accept no or we’ll come back to you. Insist, it’s such hard work for you and your Dad. Sadly what should have happened is in the past, it happened to my Mum, even after 8 weeks in hospital, Home with nothing, now I know, I ask immediately.
As Amy said contact GP, request home visit GP will come tomorrow.
Your all deserve support and help.
Take care. X
I’m disappointed and cross if the case is that hospital didn’t bring in social services to arrange a care package for when she left hospital.
I would contact adult services at your local council and make sure your Mum is registered and a care assessment is needed now, assertively don’t accept no or we’ll come back to you. Insist, it’s such hard work for you and your Dad. Sadly what should have happened is in the past, it happened to my Mum, even after 8 weeks in hospital, Home with nothing, now I know, I ask immediately.
As Amy said contact GP, request home visit GP will come tomorrow.
Your all deserve support and help.
Take care. X
Hi Melb - that's all sounding a bit familiar as mum seemed to go downhill when in hospital and was not eating, off her feet, sleeping more, very quiet. The posts above have covered most things - the SALT assessment, the social services assessment and resultant care package, with OT and physio visits (esp OT for the aids at home).
One thing which occurred to me is that maybe the sleep could be delirium related? Have you seen a dementia consultant? I don't fully understand delirium but the consultant said any changes to mum's routine could cause her to go into that state. I think some of the unresponsiveness and 'drowsiness' in my mum's case could have been that. I see the Alzheimer's Society do have information on it: https://www.alzheimers.org.uk/info/20029/daily_living/370/delirium
Mum was put on a thick puree diet in the hospital. She's also been on the fortified drinks and desserts since then as a back up. Now she's home a dietician comes out every month or so to weigh her and make suggestions - so there's always someone to help you if you're stuck for ideas.
With the right diet, care support, mobility aids, physiotherapy and a new normal routine hopefully life will improve for your mum.
One thing which occurred to me is that maybe the sleep could be delirium related? Have you seen a dementia consultant? I don't fully understand delirium but the consultant said any changes to mum's routine could cause her to go into that state. I think some of the unresponsiveness and 'drowsiness' in my mum's case could have been that. I see the Alzheimer's Society do have information on it: https://www.alzheimers.org.uk/info/20029/daily_living/370/delirium
Mum was put on a thick puree diet in the hospital. She's also been on the fortified drinks and desserts since then as a back up. Now she's home a dietician comes out every month or so to weigh her and make suggestions - so there's always someone to help you if you're stuck for ideas.
With the right diet, care support, mobility aids, physiotherapy and a new normal routine hopefully life will improve for your mum.
