Ask Me Anything 26th April - COMPLETE
Our Ask me Anything session has now started - please leave any questions you have for Lynn below.
The Simplyhealth Team
BRIAN1925 My husband has advanced dementia, and has not seen his consultant for 18 months, I have been trying for over a year to see him and he refuses, I have written to him to tell him of his 'sundowning' , but to no avail, my own GP on her first attempt to get an appointment was turned down, then on her second attempt was told he would get one, however this was not actually correct, he had been allocated a mental health nurse, ( this nurse in the past gave no input whatsoever her communication skills left a lot to be desired). They say I have to send him to day care (at £100 per day) and respite before he would Consider seeing him. No one could tell me why this would help sundowning, we have been married for nearly 64 years, and I know my husband inside out, and I know for certain to go into care would send him backwards as he needs me in his sights all the time, WHICH I AM HAPPY TO DO SO, I WANT TO CARE FOR HIM, I am very good at handling his illness, I even handle his diet for his diabetes, which has kept him off medication. Surely he is entitled to at least a conversation with a dementia specialist. WHERE IS CARE IN THE COMMUNITY???. I read a paragraph in an old copy of the MIMS which said anyone with advance dementia should be reviewed specialist regularly, and that the carers views be considered. I probably sound a lot bolshie but I am not just very frustrated with the system and am a very loving wife who wants something a little better for her husband.Shirley Sledmore.
I’m sorry to hear you are experiencing such difficulty in accessing services for your husband.
I’d like to break this down a little
-I would ask on what grounds the consultant is refusing to see your husband, especially if the GP has made the referral. You should ask the GP to challenge this on your behalf
-Is his case still open to the mental health team? If not, I do recommend you contact them and inform them of the significant change and challenges your husband is now experiencing. Again, this may have to be done by the GP
-If his case is still open, make contact with the team leader if you are unhappy with the current case holder and request another nurse to visit
-Is it the local authority or mental health nurse suggesting he attend a day care? They may feel this will give you respite and also a way of assessing his needs but this should be made clear to you. Your husband can’t be forced to go anywhere he doesn’t wish to
-It would be beneficial for you to have a carers assessment to identify what support you are entitled to
-Have you been in touch with the Alzheimers society who are able to provide support and guidance in such circumstances. They will tell you if there is a Admiral Nurse service in your area.
Thanks for replying Lynn, I will attempt to go through my husband's history with the Dementia clinic since he last saw the M.H. consultant October 2016. December 2016 I got a call from his appointed M.H. nurse, she said the consultant was not busy, and he wanted to see my husband to tell him he had dementia, (it had been my decision for him to go on believing it was just memory loss, as I had a close relative who was told of their dementia which led to catastrophic results, and I did not see any reason to upset him unnecessarily, when he would not remember that is if he was able understand) therefore I turned down the offer of an appointment if that was the sole reason.
In the spring of 2017 his condition worsened considerably, so I phoned the M.H clinic to ask for his nurse to phone me, she did not return the call. Later in the summer I again made the same request, the response was to send the senior nurse to our home, she was nice and very easy to communicate with, however at the end of
the consultation she informed me the M.H. consultant would not be seeing my husband again nor would the nursing staff, WITHOUT GIVING ANY REASON.
Over the new year 2018 my husband became quite physically aggressive, so I went to see our GP who in my presence tried to get an appointment with the M.H consultant and was turned down.
I then phoned the clinic to ask the reason, the consultant phoned me back, he was very Kurt and said I was incapable and he should go into care HOW COULD HE SAY SUCH A THING WITHOUT A PROPER INTERVIEW??
Things were not improving so I wrote to my GP to ask her to get us a private consultant, she in turn got in touch with our MH consultant who agreed to see us. This promise was not quite true as I was allocated a nurse, when I was led to believe we had a consultation.
My husband talks constantly to himself in the mirror, which during the day it is his best friend, which makes him happy the image understands his gobbledygook, however late afternoon and evening the image turns into my man friend or a burglar which makes him angry, (I cover the mirrors but he takes off the covers, and most of the mirrors are permanent fixtures) this and many other problems that happen in the evening makes me believe it is "sundowning" . I cannot see why day care and certainly not respite can help. We are conjoined, and if he got separated he would have a very bad affect on his behaviour, I understand him and am learning daily how to deal with his problems. I know I am protective and make no apologies for that but I am also very caring and look after my husband very well and wish to continue, all I am asking for is a dementia specialist consultation, surely my lovely husband is entitled to this service.
No I have not contacted the Alzheimer's society yet, however I have contacted the CCG, a n d just had a acknowledgement.
I just cannot understand the M.H. clinic attitude, I have always been pleasant to them, perhaps they do not like me but why should that matter, it's my husband that needs medical care.
Sorry for the long winded reply, but I honestly could write a book.
Further to my communication yesterday, I would like to add a little more about my husband. He does not like visitors, when anyone visits he either tells them to go or shuts himself in another room closes the curtains and sits in the dark, this may be because he cannot communicate a n d cannot understand what is said to him. He gets claustrophobic when he is shut indoors, when I sense this coming on I take him for a walk (several times a day, weather permitting) we also have a very secure back garden. I deal with his insecureness by constantly cuddling and kissing him. He is a faddy eater, although not as much as he used to be, but he has all home made good quality food, I am able to control his treats so that his sugar levels do not rise. This is why I know he is better cared for at home. I try to stimulate him but his concentration does not last, he used to love his sport and I pay for sky sport, however he will watch for a few minutes only, I have done jig saws puzzle with him, he no longer will do them, I video Countdown which was a favourite, although he sometimes can get a word, he wants it turning off after a few minutes.
I hope this he l ps you understand my husband.
Pidgeondog123 We are looking for holiday properties for a C 4disabled needing every thing lives in powerchair thank you
There are a number of organisations that offer suitable holiday properties and will depend on where you are looking. Revitalise is a good organisation to consider
It is possible to hire equipment to be put into the property rather than taking everything. You can contact local mobility shops in the area you are visiting and quite a few will support with hiring equipment.
Cruises are also a good option and cater well for disabled people. You will need to have your own carers which can make it a more expensive option, as they will need their own cabin but worth considering. I do advice booking well in advance to ensure you get an adapted cabin
Equipment can be hired for the ship also, including specialist beds, commodes, shower chairs and hoists.
Good luck and hope you have an enjoyable time
Hi Lynn-Osborne I’m worried about my grandma in her nursing home. It seems like a nice place but she seems to have lost all motivation and is much quieter than she was before. I wondered if there are any tips to try and keep her more engaged?
Firstly, how long has your Grandma been in the care home? If it is early stages, this might be her just getting used to a new environment
Have you had the opportunity to talk to your Grandma about this to see if she is worried about anything
Have you spoken to the care home manager to discuss your concerns? This would give you the opportunity to review her care plan and discuss things she would like to do within the home and what you feel may motivate her
Most homes have an activities coordinator and I suggest also talking to them and I'm sure they will be able to help
Hidden Do residential care homes need to be registered to take in dementia residents. Regards Jan
Yes, if a person has a diagnosis prior to entering the home, the chosen care home does need to be registered. However, most homes are able to support people who later develop dementia
SquirrelsHolt Hello Lynn,could I ask you for some advice to do with my son,in his mid 20's who is my carer. Although he never says anything, I know as his mother,he is tired and worn out and his horizons(in my opinion) don't look as though things will get any better. I have severe COPD,depression anxiety/panic attacks and pulmonary hypertension. He is my world and we have only grandparents who are in mid 90's so cannot even be expected to give any respite for him. Is there anywhere/anything that he could perhaps get some very much needed respite. He is so protective although my best friend could stay over for a couple of days if needed. Unfortunately we only have government benefits to rely on,so its all rather a mess. Your advice would be extremely welcome.
What a great son you have and a real credit to you. As a mum, I sympathise and understand your wish for him to have some time out.
You mention your best friend and would suggest asking her to support you both to have an open and honest conversation to find out how he would feel about taking a break. Often, we make assumptions how someone feels but don’t always get the opportunity to talk openly and would recommend this as a starting point.
If your friend has offered to stay with you, I would encourage you to take her up on her offer. Ask you son if there is anything specific he would like to do. Is there an event he would like to attend? You could take this as an opportunity for your friend to visit and he would have a purpose for the break
If you haven’t done so already, ask your local authority for a care assessment for you and as part of that request a carers assessment for your son. This will identify what support he is entitled to and they will give you information on what is available, including information on charities and benevolent funds who may be able to help.
There are several support groups he can make contact with, such as:
Carers Trust - carers.org/
Thank you so much Lynn for all your suggestions. I will most certainly follow up on the Carers links you gave me plus my local authority to see what they can offer. I must thank HU and Care in the Community for contacting you and giving up your time.
With sincere thanks and good wishes,SH.
You are very welcome and hope it goes well
Thoms98 I am not sure that there is an answer to my situation. I have been a carer for my husband, suffering from Parkinson's and limited mobility from an injury to his spine. The care agency that I use, is unable to send the same staff because of staff leaving and retention, I have used this Agency for the last ten years. I am reluctant to change providers because starting afresh for my husband would be very emotional. His condition is getting worse and he needs carers that are aware of Parkinson's deterioration.I have spoken to the provider and the answer is staff shortages. This is making Brian's anxiety worse. It is causing me much concern. I am having a week away with family and organised a sleepover plus visits four times per day, I have done this before, This time because of staffing difficulties there are 9 different carers.
The obvious answer is change providers. I feel that Brian could be at the end of his life and presently his quality of life at home with me is good. We have been married for 63 years. I do need a break to continue caring for him. I am strong but getting old myself. I consider us lucky to have a nice home and pensions to pay for support. Family help me dealing with finance, advice on maintenance of daily living.
I am sorry to hear you have experienced poor service from your current provider and do understand your wish to remain with them. However, it sounds as though you have given them plenty of opportunity to rectify this. Maybe now is a good time to change, as difficult as that may be.
I would advise you contact your local authority or your social worker, if you have one, for advice on alternative providers. This is regardless of who is funding the care
If your husband support from a Parkinson’s nurse I suggest talking to them as they may also be able to help
Would your family be available to support you in meeting with an alternative provider? A good agency would be happy to meet with you under no obligation and take on board your concerns.
Ask about their staff retention as this is a key concern, as well as their experience in caring with people with Parkinson’s and end of life.
Ask the local authority for a carers assessment to determine what additional support might be available as respite as well as talking to Parkinson support groups
Would your husband consider respite in a residential home at all? This can be planned and give you a complete break. As an alternative, Live In care can also provide respite and your husband can stay at home and you take a break
brendaanna I am in a similar position .I desperately need a few days away .My husband has Parkinson's and mild Dementia and is very difficult to look after. I don't have an agency at the moment but do have a cleaner once a week and a man to help with the garden.
I don't know who to contact to get further help. We have quite good pensions and some savings.
Making contact with your local authority Adult Services department to request a care needs assessment is the starting point. At the same time, you can ask for a carers assessment for you.
Your husband is entitled to the Needs Assessments regardless of his finances.
I would also advice seeking independent financial advice also
Anonymous (via email): My mother has just moved into an retirement/assisted living apartment as she has a number of health issues which meant she was struggling to live alone. She has carers pop in for ten minutes at a time 4 times a day.
I'm a little bit worried that we left moving her too late as she is still struggling with personal hygiene and going to the toilet etc. I am also worried she is showing signs of memory loss and her mobility is decreasing.
Her complex has a care home attached to it, so I guess I have a couple of questions:
- Can I make the decision that she moves into the home or does that need to come from her?
- Could the carers raise a flag if they see her deteriorating meaning the owners of the residential apartments could make her move if they think she can't live alone?
She paid outright for her apartment after selling her house.
I'm sorry to hear your mother is struggling and this may still be very early days of her moving and getting used to the change.
Firstly, I would look at the current care she is receiving and see if they are able to extend their times. Is the current care provided by the complex? If so, I suggest talking to them to understand if they are able to increase the level of care at this time.
Your mother is still entitled to a Care Needs Assessment from the Local Authority and if concerned I suggest calling them
Regards moving to the care home on site, if your mother has capacity it is her decision and a social worker will be able to discuss this with you.
If not, does she have a Lasting Power of Attorney in place for Health and Welfare? If so, and you are the attorney, you can look to support her with next stage
The carers should certainly be talking to her and you about any concerns they may have and work with you to resolve. I would be looking at them increasing the current care or having care from outside before the care home
Jacki66 Hi Lynn. My husband is a young disabled man who has qualified for a package of care 4x per day in England. I have not taken this up as I prefer to do the care myself as a trained nurse. However, can this not be converted to helping in our property such as garden mowing? I have asked this of Social Services and do not get a straight answer from them at all! They say the care needs to be for the welfare of my husband which it would be as it is his property and his garden. Can I have a definitive answer on this please?
Funding provided by the local authority would be primarily for your husbands assessed personal care needs and would not normally pay for such tasks you mention
I am supporting my father who is 91. I am not classed as his Carer as he stubbornly does not want one.
He has Parkinson’s and Lewy Bodies Dementia.
I see changes in him as does my husband. But he will not agree that there is anything wrong with him. Is this usual?
I think he is at the stage for some extra support, how do you think I should go about this?
Sadly, this is very common and it is difficult to support a family member who doesn't see an issue
Has there been any involvement from Older Persons Mental Health (OPMH) team. If so, I would suggest calling them and alerting them to any concerns you may have and they will be able to advice
Is there a Lasting Power of Attorney in place for Health and Welfare?
Although, you say you are not a carer, it does sound like you do support your father quite a bit and you may be entitled to a carers assessment
Sometimes just engaging a cleaner to support once a week can be beneficial and using a care agency for this can help to be eyes and ears and alert to any concerns
Thank you everyone for your questions - we hope you found this useful.
Thanks also to Lynn-Osborne for all of your great advice.
Keep an eye out for our next session coming soon.
By the time a patient has finally received a diagnosis of dementia, most of them have at least 15 different medications, these medications have been prescribed for symptoms only. We no longer live in a society where GP's have time to investigate thoroughly, underlying gut issues, nutrition, vitamin deficiencies ''eat real food'' ? Some of the most commonly prescribed medications interfere with absorption, Metformin, Proton Pump Inhibitors, statins, this list goes on, depleting the vitamins our bodies & brains quite clearly need to function, memory & cognitive function are highly effected by these pharmaceuticals. #VitaminsB4Pharmaceuticals.
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