Janet’s introduction
Janet thanked everyone for attending our final Carers Support Group Over the years she and Tatiana have helped many members. Although we will not be meeting formally Janet let members know they can still email if they need some assistance and we will do our best to help.
Member updates
Care
A carer who has attended for several years expressed sadness that the meetings were finishing. He is appreciative of the help and support he has received. He said his wife’s dementia is very now advanced. She is physically ok though getting weaker.
A daughter said her Dad is stable. He has advanced dementia and is now bed bound and spending a lot of time sleeping. He does still have a good appetite. They have an issue with a urologist wanting to give him a catheter and they are not sure about that. The daughter thinks it’s a bit invasive and could cause problems when he moves or if he pulls it out. They have raised their concern with Donna, The Advanced Dementia Nurse at Oxleas. She and her Mum are mindful of him spending too much time in one spot. He does spend in a chair as the carers get him out of bed.
Tatiana suggested they ask the urologist what is the rational for the catheter? Are there other options? Make sure everything is discussed and covered before going ahead.
Janet said it is important to balance the risks and benefits. They should speak to the Urologist as Tatiana suggested. They can say we don’t agree consent at this time if they don’t think it is needed. It would also be a good idea to seek Donna’s advice once they have spoken to the Urologist.
A new member informed the group her Dad was diagnosed during Covid. He was given dementia medication. His wife died before Christmas so his mood is up and down . She is worried about his safety now he’s living on his own though she wants him to live independently while he can. Also his behaviour is changing. The biggest issue is how to have the conversation with her Dad to broach her concerns with him.
Janet asked does your Dad realise he has a problem?
The daughter replied he gets frustrated and she thinks he knows deep down he has a problem but he won’t talk about it.
Janet explained that denial can be due to due to two possible scenarios. Sometimes dementia can present in a way that someone may not realise they have a problem due to where the damage has occurred in the brain. Denial can also be a coping mechanism in that if someone doesn’t accept they have it then they don’t have to deal with it.
The husband with the the wife with dementia said in the early day his wife was in denial and thought he was making it up when he tried to talk to her about it.
The daughter said he admits his memory isn’t as good as it was. Janet suggested she could explain to friends and his close neighbours the he Dad can be a little forgetful and how they can support her Dad when he can’t remember who they are. For instance, when they meet him they can say ” hello John, I’m Mary your neighbour ” so he doesn’t have to try to work out how he knows the person.
Tatiana explained that denial is a common reaction especially with the loss of his wife which would give him further stress. Stress can affect memory even if someone doesn’t have dementia. Janet added that dealing with grief also affects memory.
Tatiana suggested the daughter look at support options to protect herself. She could get someone to to do the practical things she’s not bothered about. Janet mentioned CareMark who she had recently learned about via Mind who know a couple of people who are using their services. It could be worth having a chat with them.
Tatiana suggested she can get information for entitlements and advice from the Greenwich Carers Centre. She can also contact Greenwich Social Services for a Carers Assessment.
Another daughter explained about her Mum’s diagnosis and what happened. She suggested the Evergreen company were very good. Also Elderberries a cafe in Welling. This is a place to drop in for tea and cake or a meal. Advice is available.
Another member said her Dad is 98 with moderate dementia. He’s fine. He has carers 3 times a day but she is not happy with the carers. She wanted to know about care options that other members had used.
Janet mentioned direct payments was an option. This is where if entitled she could manage the budget Social Services allocate on behalf of her Dad. This would mean she could choose the carers she wants to provide his care. Janet added the Greenwich Carers Centre is running a course on Direct Payments on 14/01/25. She can contact them for more information or to book a place.
One member said to speak to Social Services to ask for help and information about payments as they have a duty to provide information.
Another member uses Bluebird Care. He said care received depends on the people. He now employs two people privately.
The daughter said she currently pays for 4 nights a week privately the on top of the other care via Social Services appointed agency. She said some of the carers are amazing and some are not. She feels there’s no continuity and she never knows who to contact if there are issues. She feels it’s hard to manage.
Tatiana informed her that she can contact Social Services to raise her concerns. She can also ask the agency for a first point of contact number. She can also send an email saying it’s urgent if that is the nature of the situation.
Janet added that if she is struggling, the Greenwich Carers Centre can make a call on her behalf with her permission.
Another husband said he has since spoken with a member of Mind and has been given a course of action which he found helpful. His wife has had a medication review. She’s not sleepy properly although she requests to go to bed. She has gone on strike regarding feeding herself so she has to be helped. Currently he has not had help from carers.
Janet- asked why he doesn’t want carers in to help. She added, if you don’t look after yourself what will happen? She suggested thinking about what things could someone else do to help.
Another husband said – It’s essential to get some support even though you think your wife won’t accept it as she will get used to it. It’s important for your mental health. He added, do it before you are forced to do it due to an emergency. Another carer said her Mum didn’t want carers in to look after her Dad as she wanted to be involved in his care. However, eventually she had to accept she needed some help. Mum agreed to help from carers and they started with bathing and what Mum & Dad felt comfortable with. It has made such a difference and Mum still does things for him.
She added, there’s lots of emotion involved in these decisions so it has to be managed delicately.
Janet said making these kind of personal decisions are difficult. The issue is the change in someone with dementia can be gradual, so that living with it day to day the reality of the changes is not always noticed as it is how things are. However, if you can think back to how things were a year ago and compare them to now, quite often you can realise how much the situation has changed.
Tatiana advised – It’s easier to arrange care support when things are not an emergency as opposed to when care support is needed urgently.
The carer who mentioned her parents said getting carer help makes you feel that your not alone with your caring responsibility.
Janet showed the members The Memory Activity Book, two copies of which she purchased second hand from ABE books, which is proving to be very popular with the Carers Library at the Friendship Group. The book contains various activities to do covering a wide range of interests. Each activity contains hints and tips that not only show you how to do it, but also include ways to adapt the various physical exercises, games, and craft projects for different abilities, or to include family and friends.
Second hand copies are also available via Amazon or you may be able to borrow a copy from your local library.
Tatiana – Reminded the group of one of our favourite sayings. ” Every day may not be good, but there is something good in every day”.
Janet finished by thanking everyone for attending the group and reminded them of the possibility of a 40 minute zoom session if they wanted it. Please contact Janet via the email address if you require this.
Janet read: “The circle of control”.
Gyda read: “Celebrate”.
The Carers Group has now closed
Reflections 