New to group, will be asking a good few questions!

Sulliven

Registered User
Apr 2, 2024
14
0
Hello. I have been following this group for a while and have learned so much. My MIL has recently been diagnosed with moderately severe dementia. She never actually saw a doctor, just the nurse in the clinic and after 2 appointments was given the diagnosis. The nurse stated that with the presenting information and a visit by an OT to her house they could diagnose and my MIL would not require a CT scan. is this the norm? They said there was no point in doing a CT as MIL refuses any medication and further medical intervention etc.
My MIL presents quite well to people initially who do not know her. She is able to take care of her needs such as washing, showering and keeping her house tidy. Instrumental activities of daily living she cannot,
*unable to sort out finances - cannot count money, struggles with remembering PIN number, using a cash machine as does not always recognise numbers, gives out bank details over the phone and has had two episodes where bank cards have had to be cancelled due to scams.
*gets muddled with medication. She was overdosing on tablets or not taking them at all. In the end she refused medication and GP stated this in her notes. Recent carer intervention and due to a funny turn due to high blood pressure, she will take one daily tablet which is stored in a safe as she misplaces items otherwise.
* DVLA took her licence so she decided to start taking a bus to her local town. She has never used a bus in her lifetime and she finds it increasingly difficult but will not admit to it. She cannot read which bus to take, she does not understand what is being asked by bus driver (there are a few buses that go different routes but end up in same place), she refuses to wait in a bus stop shelter for a length of time so keeps missing the bus as starts walking back and forth away from the bus stop. It is by pure luck she gets a bus at all - we have had to pick her up in evening and we are aware of her being brought home by a good samaritan as she missed her bus stop. Thankfully she has not been on a bus for the last 2 months as had recent care support but MIL has started saying she wants to go on bus again so waiting to see what happens there!
* She can only prepare a simple sandwich or heat some soup up. She has always had a poor diet. She only drinks coke and has done for at least 20 years. Taking a sip of water is a major task for her! Also was only eating chips done in a chip pan but the chip pan was removed due to her forgetting it was on and it catching fire. Thankfully she has a call centre alarm system in house who alerted the fire brigade who found her carrying chip pan out of the house! She has no concept on what to buy in a shop and gets fixated on buying items such as butter which she has enough of! She does not know to check food if it is spoiled etc either.

Social services are involved and have put in an interim care package of a carer going in at lunchtime for a welfare check, make her lunch and prepare some dinner and supervise her taking her tablet. This has been such a huge relief as we cannot check on MIL daily, maybe every 4/5 days. It was working well and MIL enjoyed the company and had stopped thinking of going out on bus. However MIL is independent and has been making a sandwich before carers come as does not want them to help her (she says they do not do a good job!! They cannot even do a good job of washing dishes in her opinion!), refuses them to make her any dinner and just wants to chat to them and lets them get out tablet for her. From speaking to social worker, it sounds like care will be removed as the carers are basically not doing anything due to MIL not letting them but in our opinion we feel MIL is not coming to any harm as she is being checked upon daily and is actually eating something (she does not have a huge appetite and we think only eating as knows being checked upon). Also MIL has started saying that she does not want carers there and will stop them. We really do not know what to do for best. We had thought if social worker stops care package that we would initiate aa carer going in daily instead. My husband only has finance LPA , is this something we can initiate with this LPA?

We really do not know what to do as think care package will be removed. In some ways we feel we should just see how things pan out if MIL refuses care if care package removed. My husband is at his wits end. His mother is a difficult woman who was not a huge presence in my husbands life while he was young. Out of duty he is doing all he can and he is doing all his best to preempt a crisis occurring. It is difficult as I am not involved with MIL at all as she has always disliked me so I support my husband from afar by researching and advising him what steps should be taken.

MIL has no concept that there is anything wrong and believes she is capable of everything. Completely forgets what problems crop up that we have to deal with on a regular basis and we feel isolated as we feel that if daily care does go, a crisis will occur quite rapidly.

Thank you for reading all this! I hope it makes sense! As I said previously MIL presents well to anyone new but after a while will realise her short term memory is deteriorating rapidly, repeats herself constantly, conversation is not expansive and if you delve further limited knowledge of time, date, general understanding. I have read that symptoms etc of each stage can overlap but I am shocked that we were given a diagnosis of moderate severe dementia and MIL can still do certain things. It makes myself and my husband question ourselves daily and ask if we are overthinking things and just let MIL be and see how things go but we just know in our heart this will not be the case and a crisis will occur.
 
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donkeygirl

Registered User
Mar 18, 2024
10
0
Welcome. Had a similar time with my mum. When diagnosed she was coping quite well. She had a carer go in for about 2 years to try to encourage her to eat,take pills,get out of bed.
She was adamant she was OK.
I am an only child and did not live near her. She set the microwave on fire once,luckily the neighbour heard the smoke alarm. I have both LPAs and decided Jan23 to move her to my town in a care home.She thought it was a little holiday but settled ok.I still feel guilty but know it was the best thing.
We had lovely walks out and time together which when she was at home we didn't get. She now seems to have jumped forward with the stages(she was ill at xmas) and doesn't really know me I don't think. So I am relieved we did the move and she is now somewhere safe. I will have to wait to see how things go from here.
 

GinaBear

Registered User
Mar 8, 2024
53
0
42
Essex
Hi hun. I haven't been here long. And my first message on the forum was almost exactly the same as yours!

This is an amazing place. It doesn't matter what your question is, people hear you. They help. No question is too big or too small. And this is the only place I feel heard. And supported. And I also get help from the Dementia team who run the forum.

Please don't worry. We are all in the same place. Be it you are suffering from dementia or you care for dementia patient as a child or another relative. And many other scenarios. Don't worry. All these amazing people have your back with their experience and knowledge.

Xx
 

Collywobbles

Registered User
Feb 27, 2018
440
0
we feel that if daily care does not go, a crisis will occur quite rapidly.

…we just know in our heart this will not be the case and a crisis will occur.
As harsh as it might seem, this is sometimes necessary to trigger the next stages of care. Some folks have informed Social Sevices in advance that they will be unable to provide any support for a number of weeks, then they have stepped back. This is a risky strategy in the short term, but it can address longer term safeguarding issues.

Have you ever spoken to her neighbours? If you prime them, they might feel more comfortable to phone the police if they see your mother outdoors and clearly struggling. The police have a safeguarding role and can call in Social Services as well. It would add weight to her need for more, rather than less, care.
 

SherwoodSue

Registered User
Jun 18, 2022
779
0
Does your MIL have attendance allowance? Even if SS pull visits you could still use these funds to finance some visits?

My mum was also diagnosed by OT at home

Profile as to what our relatives can do/ can’t do is similar. I was surprised to have it explained to me that mum DOES lack capacity as she cannot work out the consequences of any decisions she makes.

You will not be able to meet your mothers needs with no carers, sadly many here have found that things have to get to a crisis point before decisions get made for the PWD rather than by PWD.

Thinking of you.
 

northumbrian_k

Volunteer Host
Mar 2, 2017
4,796
0
Newcastle
Hi @Sulliven and welcome to the Forum. This is a friendly and helpful community of people who have experience of and truly understand dementia and what it does to the person, their family and carers. Ask any questions, share your concerns or let off steam, that's what we are here for.
 

Sulliven

Registered User
Apr 2, 2024
14
0
Welcome. Had a similar time with my mum. When diagnosed she was coping quite well. She had a carer go in for about 2 years to try to encourage her to eat,take pills,get out of bed.
She was adamant she was OK.
I am an only child and did not live near her. She set the microwave on fire once,luckily the neighbour heard the smoke alarm. I have both LPAs and decided Jan23 to move her to my town in a care home.She thought it was a little holiday but settled ok.I still feel guilty but know it was the best thing.
We had lovely walks out and time together which when she was at home we didn't get. She now seems to have jumped forward with the stages(she was ill at xmas) and doesn't really know me I don't think. So I am relieved we did the move and she is now somewhere safe. I will have to wait to see how things go from here.
Hello and thank you for your reply. It's good that your mum has settled and as you say, know it was the best thing to do. It's difficult with my husbands mother as she has been a difficult woman over the years and was an absent mother in my husbands younger years. Harsh as it sounds, we have decided we will do as much as we can to a point and we feel we are at that point now so we may have to step back as MIL does not accept that she needs input.
It's taken me a while to pluck up the courage to write on here and I am so thankful for what I have learnt and for people to respond to my ramblings/questions! x
 

Sulliven

Registered User
Apr 2, 2024
14
0
Hi hun. I haven't been here long. And my first message on the forum was almost exactly the same as yours!

This is an amazing place. It doesn't matter what your question is, people hear you. They help. No question is too big or too small. And this is the only place I feel heard. And supported. And I also get help from the Dementia team who run the forum.

Please don't worry. We are all in the same place. Be it you are suffering from dementia or you care for dementia patient as a child or another relative. And many other scenarios. Don't worry. All these amazing people have your back with their experience and knowledge.

Xx
Thank you ❤️ What you have said means a lot x
 

Sulliven

Registered User
Apr 2, 2024
14
0
As harsh as it might seem, this is sometimes necessary to trigger the next stages of care. Some folks have informed Social Sevices in advance that they will be unable to provide any support for a number of weeks, then they have stepped back. This is a risky strategy in the short term, but it can address longer term safeguarding issues.

Have you ever spoken to her neighbours? If you prime them, they might feel more comfortable to phone the police if they see your mother outdoors and clearly struggling. The police have a safeguarding role and can call in Social Services as well. It would add weight to her need for more, rather than less, care.
Hello and thank you for repsonding. Yes we are at that point that we feel we have to step back and have said to the social worker we can do no more than we are.
Unfortunately MIL does not get on with any neighbours. This is not due to her dementia but she has always been like this, a busybody who falls out with everyone who does not agree with her but then is good at putting on a show that she is not in the wrong. She does have a big front garden which she loves to potter in and thankfully people do pass frequently so would see if she gets to any harm. Last year she had a fall in the garden and broke her neck but she got herself up and rang my husband. She has a hazy memory of this episode as my husband frequently brings it up with her to remind her that this could occur again and she may not be in a position to ring him or someone may not spot her. He states this is why a carer has to come in each day to check on her but this falls on deaf ears! She is 81 and still thinks she can climb up ladders to cut trees. We've obviously taken ladders away but she will climb on chairs instead! All this has been told to social services but I think they just do not see it and just see that MIL can make her own lunch so no carer intervention is required at present!
If care support is withdrawn we have thought to get care support in instead but MIL is now at that stage that she is stating she does not want a carer so again I think it may be the case we do not initiate care support and see what happens. Its hard one to decide.
 

Sulliven

Registered User
Apr 2, 2024
14
0
Does your MIL have attendance allowance? Even if SS pull visits you could still use these funds to finance some visits?

My mum was also diagnosed by OT at home

Profile as to what our relatives can do/ can’t do is similar. I was surprised to have it explained to me that mum DOES lack capacity as she cannot work out the consequences of any decisions she makes.

You will not be able to meet your mothers needs with no carers, sadly many here have found that things have to get to a crisis point before decisions get made for the PWD rather than by PWD.

Thinking of you.
We have applied for AA so hopefully this will be granted so yes was thinking this could go to a daily welfare care check. Husband only has finance LPA, can he decide to get care support with this, he doesn't need health LPA? We are not going to apply for health LPA, MIL lacks capacity now and husband does not want to take on that role and leave it to health professionals to decide.

What you stated " does lack capacity as she cannot work out the consequences of any decisions she makes" hit the nail on its head! It's so true in regard to my MIL, its so hard to explain sometimes to others what we are trying to get across but that statement says it all.

We do feel we are waiting for a crisis to occur. At present husband is exhausted ensuring everything is in place to prevent one but it is becoming more difficult due to MIL's increasing difficult behaviour and my husband just cannot do it anymore due to his work schedule.

Thank you for your reply ❤️
 

Sulliven

Registered User
Apr 2, 2024
14
0
Hi @Sulliven and welcome to the Forum. This is a friendly and helpful community of people who have experience of and truly understand dementia and what it does to the person, their family and carers. Ask any questions, share your concerns or let off steam, that's what we are here for.
Thank you ❤️
 

Izzy

Volunteer Moderator
Aug 31, 2003
75,867
0
73
Dundee
A belated welcome from me too @Sulliven. I hope you get the Attendance Allowance sorted out as it does sound as if your MIL needs these visits. I’m sure as her dementia progresses the carers would increase what they are able to do for her.
 

Sulliven

Registered User
Apr 2, 2024
14
0
A belated welcome from me too @Sulliven. I hope you get the Attendance Allowance sorted out as it does sound as if your MIL needs these visits. I’m sure as her dementia progresses the carers would increase what they are able to do for her.
Many thanks ❤️