• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

Sudden lack of mobility & sleeping

Patrioted

Registered User
Jul 4, 2017
23
Hi, my mum has Alzheimer's and has lived in care for 18 months. Mum has periods of time when she is awake and alert although confused about time, family and the usual mixed up thoughts for over 48 hours continuous. She then crashes for days and sleeps so deeply that she is unresponsive however we try and rouse her. There are periods of time when she cannot walk. It's as if her feet are glued to the floor. She falls asleep between mouthfuls of food.Other times she walks sideways and eats sideways and struggles to find her mouth. Then we return to being relatively OK. Still very confused but calm which is much better than when she refuses to do anything like taking medication or eating and drinking and she is distressed and frightened for hours on end calling out her own name and crying even when I am sitting beside her and holding her hand. Every single day gives a different challenge and there's absolutely no doubt in my mind that I want this to be over. It's so sad and cruel for my lovely mum. I know we aren't alone on this terrible journey but when there is no quality of life, no connection with your surroundings, no ability to understand or take part in a conversation I question who makes the decision that human beings have to endure such torment and cruelty.
Never forget that dementia patients feel pain but can’t articulate it in the advanced stages. Just imagine how awful it would be to suffer immense pain but be unable to tell someone you hurt or where you hurt.

Cargiving for dementia patients is among the most difficult, strenuous (physically and emotionally), stressful, and least appreciated and understood of caregiver services. They also rank among the most poorly paid except for the very best and most expensive facilities. Who wants a job like that only to earn meager wages? Would you?

I went to an Alzheimer’s symposium that warned caregivers how dangerous this situation can be for your loved one suffering with dementia. All to often dementia patients receive only the absolute minimum in care. The lucky ones get great care but it’s very expensive care. That’s why it is so important to carefully shop for quality caring facilities. You can still find some quality care facilities in the mid-price range if you carefully look for them but they are rare.

If you can’t afford quality care your only hope, and most importantly your loved ones only hope, is for you and others to frequently visit and check on them. The very first “red flag” to look for are facilities that strongly regulate visitation hours. It’s normal to control access at night and early morning (before breakfast) hours so patients can have uninterrupted sleep. But the rest of the day should not have regulated visitation hours. If they do that is not for the patients benefit. It is for management and staff benefit and is a stronger indication that they may be trying to cover up something that, at best, is at least unpleasant and could possibly be serious or criminal in nature.

Here is what to look for:

1. Large and/or frequent staff turn over. This is a clear sign of staff morale problems resulting from low pay and benefits, lack of management support, over work, inadequate training, poor working conditions, unsafe working conditions, and concerns about patient neglect or
mistreatment.

2. Look for cleanliness. Never announce when you will visit your loved one. Never visit on a pattern of established times and days. You want the facility “off guard” and never knowing when you’ll be visiting your loved one. This prevents their “preparing for your visit” to put on a show for you while forcing your loved ones to endure substandard conditions the rest of the time. As soon as you walk in look around for tidiness and cleanliness in common shared areas. Is it dusty, damp, to cold or to hot? Are the doors, windows, and carpets dirty? If you’re uncomfortable there just imagine your loved one having to live in these conditions 24/7.

Look at the staff. Do you notice a lot of new faces and the absence of old faces? This could be indicative of staff morale problems and high staff turn over. Have a list of random questions to ask staff, especially new staff, and which all staff should know. If they can’t answer theese basic questions they are probably incompetent or poorly trained. Also look at staff uniform cleanliness and outwardly observable signs of hygiene issues. If they aren’t clean and taking care of their own hygiene they certainly aren’t taking care of same for your loved one.

Smell. What does it smell like? Is their an odor of feces excrement, urine, spilled food or other foul smell in the air? Also notice masked smells such as staff spraying deordizers to mask prevelant foul smells.

Touch. Touch table tops, lamps, figurines, etc. Are they dusty, damp, sticky? If so their is definitely a cleanliness and hygiene problem there. That also translates to health risks.

Taste. Be sure to show up at meal times alternating between breakfast, lunch and dinner at least a few times a month. Check - Is the amount of food sufficient and nutritious? Is it properly cooked and nutrionally balanced? Are the plates and eating utensicles washed and clean? Is the food served warm or cold? Peak in to the kitchen. Is it clean? Are the cooks clean and do they have their hair covered.

Write. Always carry a notebook and record your observations in plain view of the facility staff. You want them to see you writing. It puts them a tiny bit on edge and that is precisely what you want. They’ll know that you mean business when it comes to the care and welfare of your loved one without your having to even utter a word - yet. Be sure to date each days observation and keep your notebook to serve as an historical record. If you need it this will become a very important if not vital record.

The patient. As you greet your loved one carefully observe for any cuts or bruises. Look at their fingernails. Are they clean? Look at toe nails? Are they clean and cut? Are their cloths clean? Is their hair combed? Have they been groomed and bathed? How do they smell? Do they smell clean? Inquire about their underwear. Is it changed with clean underwear every single day? When were they last bathed. If they are inconstanant how long did they have to go without changing?

Carefully check their bed linens for freshness and cleanliness. Likewise carefully check their bathroom for cleanliness. Again, jot down every issue or concern that you observe. This is very important. Don’t forget to interview your loved one, if coherent, about their observations and concerns and note those down as well.

Before you leave ask to speak to the senior staff member present. Go over your findings with them. Offer them to make a copy of your notes but never leave the original with them. Do NOT allow them to keep your original notes. Be sure to express your concerns and let him or her know that you and others will be checking to see if corrections have been made. Also let them know that others have the same check list and will routinely be checking these areas. Do not hide this. Again, you want them to know because it greatly increases the chances of better care for your loved one. Never be mean or threatening but do be pleasantly matter-of-fact.

Make several copies of the check list. Hand them out to all family members and friends and ask them to use the same check list every time they visit your loved one. Ask them to be as complete as you to include the exit conversation with management. Make note of the management conversation as well.

Statistics prove that dementia patients who have family and friends frequently visiting them receive better care. Those who receive the fewest visits usually receive the worst care because nobody is checking on them. It is a very sad situation but it is also very true. When family use checklists like the aforementioned their loved ones tend to get the very best care. That’s because the staff knows their will be a continuous written record and collectively these notes can serve as evidentiary documentation to higher authority. Thus they risk severe penalties for failure to correct. That’s why these frequent visits and check lists are vital. Perhaps other patients will receive mediocre care (so sad) but your loved one will at least be well cared for.

It is scandalous how awful some dementia patients are cared for in some facilities. Only family and friends can prevent this happening to their loved one.

Share the checks. Workout a schedule with family/friends to visit on different days and at different times. Ask them to record their checks when they visit (copy to you). Make sure they understand why this is important. Their is a reason and a word for doing this. Some can visit more often then others but most can and will help.

No dementia patient should ever be visited less then three times a week at a minimum. If the patient is unable to recognize and communicate that is when the checks become even more important as they will no longer be able to help themselves.

Lastly, and this is very important, learn to look for signs of pain or distress in dementia patients who can’t communicate. Dementia patients can and do feel pain, they just can’t express it in the severe stages. As many as half of dementia caregiver staff may not be properly trained to check for genuine pain and suffering in dementia patients who can’t communicate. It is nothing short of cruelty to allow dementia patients to endure pain without being able to express it.
 

YorkshireLass

Registered User
Feb 15, 2017
208
Ilkley
Never forget that dementia patients feel pain but can’t articulate it in the advanced stages. Just imagine how awful it would be to suffer immense pain but be unable to tell someone you hurt or where you hurt.

Cargiving for dementia patients is among the most difficult, strenuous (physically and emotionally), stressful, and least appreciated and understood of caregiver services. They also rank among the most poorly paid except for the very best and most expensive facilities. Who wants a job like that only to earn meager wages? Would you?

I went to an Alzheimer’s symposium that warned caregivers how dangerous this situation can be for your loved one suffering with dementia. All to often dementia patients receive only the absolute minimum in care. The lucky ones get great care but it’s very expensive care. That’s why it is so important to carefully shop for quality caring facilities. You can still find some quality care facilities in the mid-price range if you carefully look for them but they are rare.

If you can’t afford quality care your only hope, and most importantly your loved ones only hope, is for you and others to frequently visit and check on them. The very first “red flag” to look for are facilities that strongly regulate visitation hours. It’s normal to control access at night and early morning (before breakfast) hours so patients can have uninterrupted sleep. But the rest of the day should not have regulated visitation hours. If they do that is not for the patients benefit. It is for management and staff benefit and is a stronger indication that they may be trying to cover up something that, at best, is at least unpleasant and could possibly be serious or criminal in nature.

Here is what to look for:

1. Large and/or frequent staff turn over. This is a clear sign of staff morale problems resulting from low pay and benefits, lack of management support, over work, inadequate training, poor working conditions, unsafe working conditions, and concerns about patient neglect or
mistreatment.

2. Look for cleanliness. Never announce when you will visit your loved one. Never visit on a pattern of established times and days. You want the facility “off guard” and never knowing when you’ll be visiting your loved one. This prevents their “preparing for your visit” to put on a show for you while forcing your loved ones to endure substandard conditions the rest of the time. As soon as you walk in look around for tidiness and cleanliness in common shared areas. Is it dusty, damp, to cold or to hot? Are the doors, windows, and carpets dirty? If you’re uncomfortable there just imagine your loved one having to live in these conditions 24/7.

Look at the staff. Do you notice a lot of new faces and the absence of old faces? This could be indicative of staff morale problems and high staff turn over. Have a list of random questions to ask staff, especially new staff, and which all staff should know. If they can’t answer theese basic questions they are probably incompetent or poorly trained. Also look at staff uniform cleanliness and outwardly observable signs of hygiene issues. If they aren’t clean and taking care of their own hygiene they certainly aren’t taking care of same for your loved one.

Smell. What does it smell like? Is their an odor of feces excrement, urine, spilled food or other foul smell in the air? Also notice masked smells such as staff spraying deordizers to mask prevelant foul smells.

Touch. Touch table tops, lamps, figurines, etc. Are they dusty, damp, sticky? If so their is definitely a cleanliness and hygiene problem there. That also translates to health risks.

Taste. Be sure to show up at meal times alternating between breakfast, lunch and dinner at least a few times a month. Check - Is the amount of food sufficient and nutritious? Is it properly cooked and nutrionally balanced? Are the plates and eating utensicles washed and clean? Is the food served warm or cold? Peak in to the kitchen. Is it clean? Are the cooks clean and do they have their hair covered.

Write. Always carry a notebook and record your observations in plain view of the facility staff. You want them to see you writing. It puts them a tiny bit on edge and that is precisely what you want. They’ll know that you mean business when it comes to the care and welfare of your loved one without your having to even utter a word - yet. Be sure to date each days observation and keep your notebook to serve as an historical record. If you need it this will become a very important if not vital record.

The patient. As you greet your loved one carefully observe for any cuts or bruises. Look at their fingernails. Are they clean? Look at toe nails? Are they clean and cut? Are their cloths clean? Is their hair combed? Have they been groomed and bathed? How do they smell? Do they smell clean? Inquire about their underwear. Is it changed with clean underwear every single day? When were they last bathed. If they are inconstanant how long did they have to go without changing?

Carefully check their bed linens for freshness and cleanliness. Likewise carefully check their bathroom for cleanliness. Again, jot down every issue or concern that you observe. This is very important. Don’t forget to interview your loved one, if coherent, about their observations and concerns and note those down as well.

Before you leave ask to speak to the senior staff member present. Go over your findings with them. Offer them to make a copy of your notes but never leave the original with them. Do NOT allow them to keep your original notes. Be sure to express your concerns and let him or her know that you and others will be checking to see if corrections have been made. Also let them know that others have the same check list and will routinely be checking these areas. Do not hide this. Again, you want them to know because it greatly increases the chances of better care for your loved one. Never be mean or threatening but do be pleasantly matter-of-fact.

Make several copies of the check list. Hand them out to all family members and friends and ask them to use the same check list every time they visit your loved one. Ask them to be as complete as you to include the exit conversation with management. Make note of the management conversation as well.

Statistics prove that dementia patients who have family and friends frequently visiting them receive better care. Those who receive the fewest visits usually receive the worst care because nobody is checking on them. It is a very sad situation but it is also very true. When family use checklists like the aforementioned their loved ones tend to get the very best care. That’s because the staff knows their will be a continuous written record and collectively these notes can serve as evidentiary documentation to higher authority. Thus they risk severe penalties for failure to correct. That’s why these frequent visits and check lists are vital. Perhaps other patients will receive mediocre care (so sad) but your loved one will at least be well cared for.

It is scandalous how awful some dementia patients are cared for in some facilities. Only family and friends can prevent this happening to their loved one.

Share the checks. Workout a schedule with family/friends to visit on different days and at different times. Ask them to record their checks when they visit (copy to you). Make sure they understand why this is important. Their is a reason and a word for doing this. Some can visit more often then others but most can and will help.

No dementia patient should ever be visited less then three times a week at a minimum. If the patient is unable to recognize and communicate that is when the checks become even more important as they will no longer be able to help themselves.

Lastly, and this is very important, learn to look for signs of pain or distress in dementia patients who can’t communicate. Dementia patients can and do feel pain, they just can’t express it in the severe stages. As many as half of dementia caregiver staff may not be properly trained to check for genuine pain and suffering in dementia patients who can’t communicate. It is nothing short of cruelty to allow dementia patients to endure pain without being able to express it.
Hi and thanks for your detailed reply. Mum lives in residential care and the staff are amazing ranging in age and experience. Several have worked there for over 15 years and hold The Gold Standards Framework for end of life care. All staff undertake NVQ qualifications. I visit every day and when I arrive I am always greeted by a friendly face and an update of mum's antics over the last 24 hours. I have occasionally visited late at night when most residents are asleep but mum is agitated and all avenues to calm her have been unsuccessfully explored.I feel so fortunate as when we needed care all the homes I visited were full with waiting lists. Cost wasn't a priority I just needed the right environment for mum and somewhere with availability. Due to a change in circumstances for a resident and an in depth visit by the manager and son of the owner of the home to assess my mum in person we were offered a place. I am fully involved with mum's GP and together with the senior staff decide on a course of action to ensure she is as comfortable as possible.A difficult one that's for sure. I really couldn't ask for more.
 

Linbrusco

Registered User
Mar 4, 2013
1,604
Auckland...... New Zealand
Hi just an update.
Now Day 7.
We decided not to send Mum to our public hospital for a brain MRI. Upheaval would be too great, and wouldn't change whats happened.
In case she had fallen ( no bruising anywhere) Care Home ( Im in New Zealand) arranged a portbale xray scanner. Mum has no fractures or areas of concern.
She has been on anti Bs & stronger pain releif in case it was a UTI, as they just couldnt manage a sample.
Mum has picked up, sleeping less, somewhat more alert.
Yesterday I went to see her with my husband whom she hadnt seen for a few months.
They have her in a special pressure mattress chair/lazy boy. She was sitting quite the thing, eating a sandwich.
Smiled at both of us, responded to me, but kept looking at my husband, but I dont think she really knew who he was. Hard to say. I made a few jokes, to which she laughed, but after about 20 mns, I felt any more talking was tiring her out.
Care Home says she has made a few attempts to get out of her chair, but still not weight bearing or walking when they try to get her up. She has been on Quetiapine since Sept last year. At that time she was aggressive, agitated, physical. It had really helped, and with Mum at the moment, her usual doses have been reduced. She is otherwise calm and cooperative with cares.
They have a pressure mattress on her bed, having to turn her every hour.
Having to use a hoist, and a commode.
They have made a referral for her to be transferred to their hospital section, as she needs more one on one, plus two carers to use the hoist. They have more carer/nurse ratios to patient.
Remains to be seen as to her mobility.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
8,541
Yorkshire
hi @Linbrusco
good to read that your mum is calm (I hope I am understanding that properly) and you had smiles from her
the home sound to be supporting her well
hopefully you feel 'easier' about the situation
 

YorkshireLass

Registered User
Feb 15, 2017
208
Ilkley
Hi just an update.
Now Day 7.
We decided not to send Mum to our public hospital for a brain MRI. Upheaval would be too great, and wouldn't change whats happened.
In case she had fallen ( no bruising anywhere) Care Home ( Im in New Zealand) arranged a portbale xray scanner. Mum has no fractures or areas of concern.
She has been on anti Bs & stronger pain releif in case it was a UTI, as they just couldnt manage a sample.
Mum has picked up, sleeping less, somewhat more alert.
Yesterday I went to see her with my husband whom she hadnt seen for a few months.
They have her in a special pressure mattress chair/lazy boy. She was sitting quite the thing, eating a sandwich.
Smiled at both of us, responded to me, but kept looking at my husband, but I dont think she really knew who he was. Hard to say. I made a few jokes, to which she laughed, but after about 20 mns, I felt any more talking was tiring her out.
Care Home says she has made a few attempts to get out of her chair, but still not weight bearing or walking when they try to get her up. She has been on Quetiapine since Sept last year. At that time she was aggressive, agitated, physical. It had really helped, and with Mum at the moment, her usual doses have been reduced. She is otherwise calm and cooperative with cares.
They have a pressure mattress on her bed, having to turn her every hour.
Having to use a hoist, and a commode.
They have made a referral for her to be transferred to their hospital section, as she needs more one on one, plus two carers to use the hoist. They have more carer/nurse ratios to patient.
Remains to be seen as to her mobility.
Your mum sounds to be getting the best care. You are all doing your best. It's good that she isn't distressed and you had "the smile". Thinking about you and sending a hug xxxx
 

DeMartin

Registered User
Jul 4, 2017
711
Kent
Never forget that dementia patients feel pain but can’t articulate it in the advanced stages. Just imagine how awful it would be to suffer immense pain but be unable to tell someone you hurt or where you hurt.

Cargiving for dementia patients is among the most difficult, strenuous (physically and emotionally), stressful, and least appreciated and understood of caregiver services. They also rank among the most poorly paid except for the very best and most expensive facilities. Who wants a job like that only to earn meager wages? Would you?

I went to an Alzheimer’s symposium that warned caregivers how dangerous this situation can be for your loved one suffering with dementia. All to often dementia patients receive only the absolute minimum in care. The lucky ones get great care but it’s very expensive care. That’s why it is so important to carefully shop for quality caring facilities. You can still find some quality care facilities in the mid-price range if you carefully look for them but they are rare.

If you can’t afford quality care your only hope, and most importantly your loved ones only hope, is for you and others to frequently visit and check on them. The very first “red flag” to look for are facilities that strongly regulate visitation hours. It’s normal to control access at night and early morning (before breakfast) hours so patients can have uninterrupted sleep. But the rest of the day should not have regulated visitation hours. If they do that is not for the patients benefit. It is for management and staff benefit and is a stronger indication that they may be trying to cover up something that, at best, is at least unpleasant and could possibly be serious or criminal in nature.

Here is what to look for:

1. Large and/or frequent staff turn over. This is a clear sign of staff morale problems resulting from low pay and benefits, lack of management support, over work, inadequate training, poor working conditions, unsafe working conditions, and concerns about patient neglect or
mistreatment.

2. Look for cleanliness. Never announce when you will visit your loved one. Never visit on a pattern of established times and days. You want the facility “off guard” and never knowing when you’ll be visiting your loved one. This prevents their “preparing for your visit” to put on a show for you while forcing your loved ones to endure substandard conditions the rest of the time. As soon as you walk in look around for tidiness and cleanliness in common shared areas. Is it dusty, damp, to cold or to hot? Are the doors, windows, and carpets dirty? If you’re uncomfortable there just imagine your loved one having to live in these conditions 24/7.

Look at the staff. Do you notice a lot of new faces and the absence of old faces? This could be indicative of staff morale problems and high staff turn over. Have a list of random questions to ask staff, especially new staff, and which all staff should know. If they can’t answer theese basic questions they are probably incompetent or poorly trained. Also look at staff uniform cleanliness and outwardly observable signs of hygiene issues. If they aren’t clean and taking care of their own hygiene they certainly aren’t taking care of same for your loved one.

Smell. What does it smell like? Is their an odor of feces excrement, urine, spilled food or other foul smell in the air? Also notice masked smells such as staff spraying deordizers to mask prevelant foul smells.

Touch. Touch table tops, lamps, figurines, etc. Are they dusty, damp, sticky? If so their is definitely a cleanliness and hygiene problem there. That also translates to health risks.

Taste. Be sure to show up at meal times alternating between breakfast, lunch and dinner at least a few times a month. Check - Is the amount of food sufficient and nutritious? Is it properly cooked and nutrionally balanced? Are the plates and eating utensicles washed and clean? Is the food served warm or cold? Peak in to the kitchen. Is it clean? Are the cooks clean and do they have their hair covered.

Write. Always carry a notebook and record your observations in plain view of the facility staff. You want them to see you writing. It puts them a tiny bit on edge and that is precisely what you want. They’ll know that you mean business when it comes to the care and welfare of your loved one without your having to even utter a word - yet. Be sure to date each days observation and keep your notebook to serve as an historical record. If you need it this will become a very important if not vital record.

The patient. As you greet your loved one carefully observe for any cuts or bruises. Look at their fingernails. Are they clean? Look at toe nails? Are they clean and cut? Are their cloths clean? Is their hair combed? Have they been groomed and bathed? How do they smell? Do they smell clean? Inquire about their underwear. Is it changed with clean underwear every single day? When were they last bathed. If they are inconstanant how long did they have to go without changing?

Carefully check their bed linens for freshness and cleanliness. Likewise carefully check their bathroom for cleanliness. Again, jot down every issue or concern that you observe. This is very important. Don’t forget to interview your loved one, if coherent, about their observations and concerns and note those down as well.

Before you leave ask to speak to the senior staff member present. Go over your findings with them. Offer them to make a copy of your notes but never leave the original with them. Do NOT allow them to keep your original notes. Be sure to express your concerns and let him or her know that you and others will be checking to see if corrections have been made. Also let them know that others have the same check list and will routinely be checking these areas. Do not hide this. Again, you want them to know because it greatly increases the chances of better care for your loved one. Never be mean or threatening but do be pleasantly matter-of-fact.

Make several copies of the check list. Hand them out to all family members and friends and ask them to use the same check list every time they visit your loved one. Ask them to be as complete as you to include the exit conversation with management. Make note of the management conversation as well.

Statistics prove that dementia patients who have family and friends frequently visiting them receive better care. Those who receive the fewest visits usually receive the worst care because nobody is checking on them. It is a very sad situation but it is also very true. When family use checklists like the aforementioned their loved ones tend to get the very best care. That’s because the staff knows their will be a continuous written record and collectively these notes can serve as evidentiary documentation to higher authority. Thus they risk severe penalties for failure to correct. That’s why these frequent visits and check lists are vital. Perhaps other patients will receive mediocre care (so sad) but your loved one will at least be well cared for.

It is scandalous how awful some dementia patients are cared for in some facilities. Only family and friends can prevent this happening to their loved one.

Share the checks. Workout a schedule with family/friends to visit on different days and at different times. Ask them to record their checks when they visit (copy to you). Make sure they understand why this is important. Their is a reason and a word for doing this. Some can visit more often then others but most can and will help.

No dementia patient should ever be visited less then three times a week at a minimum. If the patient is unable to recognize and communicate that is when the checks become even more important as they will no longer be able to help themselves.

Lastly, and this is very important, learn to look for signs of pain or distress in dementia patients who can’t communicate. Dementia patients can and do feel pain, they just can’t express it in the severe stages. As many as half of dementia caregiver staff may not be properly trained to check for genuine pain and suffering in dementia patients who can’t communicate. It is nothing short of cruelty to allow dementia patients to endure pain without being able to express it.
@Patrioted You describe a perfect world, many of us have LO in care as we cannot visit three times a week, we have no family and friends that can visit frequently.