How to get help when it’s not wanted!

Evb77

Registered User
Feb 25, 2024
10
0
My MIL has been deteriorating since the pandemic. Short term memory is terrible. You can have the same conversation 10 times in the space of 5 minutes. She fixates on specific issues and won’t let them drop. And she can be quite nasty to her husband and others close to her if you say the wrong thing. She is adamant there is nothing wrong with her and it’s just age with the memory. Her husband has buried his head in the sand about it but is exhausted with dealing with it. How do we get a diagnosis when she refuses to think anything is wrong and flies off the handle when it’s suggested?
 

northumbrian_k

Volunteer Host
Mar 2, 2017
4,489
0
Newcastle
Hi @Evb77 and welcome to Dementia Support Forum our friendly and helpful community. The situation you describe is all too common I'm afraid. It took me a long time to get my wife to see her GP but this was an important first step towards diagnosis. Perhaps her husband - or you if he won't - could share your concerns with her GP in writing. They may be willing to offer a "well woman" checkup which just happens to include a memory test. People sometimes respond better to "official invitations" than to prompting by family members.
 

Sarasa

Volunteer Host
Apr 13, 2018
7,241
0
Nottinghamshire
A warm welcome from me too @Evb77. I agree with what @northumbrian_k has said. Maybe keep a diary of your concerns and when your MiL has an appointment with the doctor for something else send in a bullet pointed list of them for the doctor to read ahead of the appointment. My mum was also convinced she was totally fine, but she haunted her GP surgery with various other things that worried her so it was quite easy to do piggyback an appointment. If she doesn't often go to the GP then it might be more tricky, but eventually there will be some sort of crisis, she'll have a fall or she'll go out one day and get lost. Then you can push for a memory test and hopefully start to get her the help she needs.
I guess your father in law is probably not telling you everything that is going on. Is it possible to get him on his own and stress the importance of having his wife checked out. Carers of people with dementia often end up becoming ill themselves with trying to keep things on an even keel.
 

Evb77

Registered User
Feb 25, 2024
10
0
Hi @Evb77 and welcome to Dementia Support Forum our friendly and helpful community. The situation you describe is all too common I'm afraid. It took me a long time to get my wife to see her GP but this was an important first step towards diagnosis. Perhaps her husband - or you if he won't - could share your concerns with her GP in writing. They may be willing to offer a "well woman" checkup which just happens to include a memory test. People sometimes respond better to "official invitations" than to prompting by family members.
That’s a good idea. I think she would respond to an invitation to a check up. She actually has a GP appointment tomorrow so my partner is going to create a scenario where he take her and he can speak to them whilst she’s in the appointment. We’ve been trying to get her husband to do something similar for months but I think he’s scared of her finding out. We need to step in.
 

Evb77

Registered User
Feb 25, 2024
10
0
A warm welcome from me too @Evb77. I agree with what @northumbrian_k has said. Maybe keep a diary of your concerns and when your MiL has an appointment with the doctor for something else send in a bullet pointed list of them for the doctor to read ahead of the appointment. My mum was also convinced she was totally fine, but she haunted her GP surgery with various other things that worried her so it was quite easy to do piggyback an appointment. If she doesn't often go to the GP then it might be more tricky, but eventually there will be some sort of crisis, she'll have a fall or she'll go out one day and get lost. Then you can push for a memory test and hopefully start to get her the help she needs.
I guess your father in law is probably not telling you everything that is going on. Is it possible to get him on his own and stress the importance of having his wife checked out. Carers of people with dementia often end up becoming ill themselves with trying to keep things on an even keel.
Her husband is 81 and it’s really taking a toll. You’re right, we’re not finding out everything and we’ve taken our eyes off the ball with dealing with my FIL and the fight we’ve had to go through to get social care!! But that’s a different story! Thanks for your reply. Sometimes you can’t see the wood for the trees.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,655
0
Kent
We need to step in.

Good idea @Evb77 Your mother`s husband is as you say exhausted and probably afraid. He is the one who has to live with her.

My husband accused me of all sorts including making him ill when there was nothing wrong with him and trying to take away his independence.

I took a list of my concerns to our doctor. Unfortunately he treated my husband for depression for 12 months before referring him to a consultant. That was in 2005 and I hope GPs are more aware of dementia symptoms than they were then.
 

Evb77

Registered User
Feb 25, 2024
10
0
Good idea @Evb77 Your mother`s husband is as you say exhausted and probably afraid. He is the one who has to live with her.

My husband accused me of all sorts including making him ill when there was nothing wrong with him and trying to take away his independence.

I took a list of my concerns to our doctor. Unfortunately he treated my husband for depression for 12 months before referring him to a consultant. That was in 2005 and I hope GPs are more aware of dementia symptoms than they were then.
We should have stepped in before now, we’ve been guilty of letting him deal with it. Nobody wants to be the bad guy!
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,655
0
Kent
We should have stepped in before now, we’ve been guilty of letting him deal with it. Nobody wants to be the bad guy!

Try not to beat yourself up over this. Dealing with dementia is traumatic and I`m sure we have all found ourselves devastated and not knowing what is for the best. Whatever we do will upset someone.
 

Evb77

Registered User
Feb 25, 2024
10
0
Try not to beat yourself up over this. Dealing with dementia is traumatic and I`m sure we have all found ourselves devastated and not knowing what is for the best. Whatever we do will upset someone.
Thank you - I really appreciate your advice.
 

Collywobbles

Registered User
Feb 27, 2018
145
0
We should have stepped in before now, we’ve been guilty of letting him deal with it. Nobody wants to be the bad guy!
We had the same scenario. Our Dad wanted to maintain Mum’s independence for much longer than was sensible and wouldn’t have any conversation with or about Mum which caused conflict.

I’m afraid without telling my Dad, with the agreement of my sister, I emailed Mum’s GP listing all of the things which were causing us concern. Helped by circumstances (a hospital stay due to untaken medication), the GP agreed that Mum was no longer able to make decisions in her own best interest, and he said he understood the difficuly in trying to deal with Dad. The GP will now either respond to our emails, or phone me to discuss matters of Mum’s health, wellbeing or safety. Dad doesn’t know about this arrangement and we’d be for the high jump if he ever found out.

But it does mean that when Mum’s due for routine medication checks or her annual appointment with a dementia nurse, we can get her to make an appoitnment without stressing the dementia angle. Any correspondence to her with the words ‘dementia’ or ‘Alzheimer’s’ on them are immediately binned, as she’s adamant that she doesn’t have anything like that.

So I’m afraid subterfuge sometimes becomes necessary. I had a good conversation about that aspect with the GP, especially the guilt that comes with effectively lying to both of my parents. He said he’d have been worried if I *hadn’t* felt that way. We concluded that as long as it’s done with good intent, then it’s in Mum’s best interests.

All the best in your situation.
 

Banjomansmate

Registered User
Jan 13, 2019
5,438
0
Dorset
That’s a good idea. I think she would respond to an invitation to a check up. She actually has a GP appointment tomorrow so my partner is going to create a scenario where he take her and he can speak to them whilst she’s in the appointment. We’ve been trying to get her husband to do something similar for months but I think he’s scared of her finding out. We need to step in.
Try and get information to the Dr. before Mum gets in to see them so that they are aware of your concerns.
 

Evb77

Registered User
Feb 25, 2024
10
0
We had the same scenario. Our Dad wanted to maintain Mum’s independence for much longer than was sensible and wouldn’t have any conversation with or about Mum which caused conflict.

I’m afraid without telling my Dad, with the agreement of my sister, I emailed Mum’s GP listing all of the things which were causing us concern. Helped by circumstances (a hospital stay due to untaken medication), the GP agreed that Mum was no longer able to make decisions in her own best interest, and he said he understood the difficuly in trying to deal with Dad. The GP will now either respond to our emails, or phone me to discuss matters of Mum’s health, wellbeing or safety. Dad doesn’t know about this arrangement and we’d be for the high jump if he ever found out.

But it does mean that when Mum’s due for routine medication checks or her annual appointment with a dementia nurse, we can get her to make an appoitnment without stressing the dementia angle. Any correspondence to her with the words ‘dementia’ or ‘Alzheimer’s’ on them are immediately binned, as she’s adamant that she doesn’t have anything like that.

So I’m afraid subterfuge sometimes becomes necessary. I had a good conversation about that aspect with the GP, especially the guilt that comes with effectively lying to both of my parents. He said he’d have been worried if I *hadn’t* felt that way. We concluded that as long as it’s done with good intent, then it’s in Mum’s best interests.

All the best in your situation.
Thank you, it’s so hard isn’t it? My partner has got to the point where he’s prepared to take the flak and be the bad guy if necessary but hopefully we can get sorted by stealth.
 

Evb77

Registered User
Feb 25, 2024
10
0
Try and get information to the Dr. before Mum gets in to see them so that they are aware of your concerns.
Yes, I think a phone call in the morning would be better followed by accompanying her to the GP for her appointment.
 

Banjomansmate

Registered User
Jan 13, 2019
5,438
0
Dorset
Yes, I think a phone call in the morning would be better followed by accompanying her to the GP for her appointment.
See if you can get a written list of concerns in to the Dr. The receptionist may not pass on a message or refuse to talk to you without MIL’s permission!
 

Banjomansmate

Registered User
Jan 13, 2019
5,438
0
Dorset
If that doesn’t work tell him to sit out of her line of sight so that he can indicate to the Dr. if she’s telling the truth about things.
 

Evb77

Registered User
Feb 25, 2024
10
0
Just a quick update - my partner convinced his mum to let him take her to the GP for her appointment. She was seeing the nurse and he managed to chat to the receptionist whilst she was in, although she returned quicker than expected. However, she was then called into the GP - the nurse had picked up on her behaviour and alerted the GP. So, in the end, he didn't need to do anything and she has been referred for a memory test at the local hospital! Now we just need to deal with receiving the letter with the appointment date and whether she remembers and how she's going to react to it! But more progress was made in the space of half an hour than the last 18 months so we're feeling accomplished. Thank you all for your help, advice and kind words.
 

JackReacher

Registered User
Oct 22, 2022
26
0
I wish you and others in the same boat all the best. My own wife had been suffering from memory loss, mood swings, weird dreams, delusions for some years and my daughter decided to push things with our GP. The doctor seemed completely uninterested. She ate her lunch at her desk as she chatted, asked my wife questions on family names, numbers, her birthday etc and said there was no problem! She then turned to me and asked me why I thought there was a problem. Totally unprofessional, insensitive and it placed me in a terrible situation. I am a professional businessman, deal with many staff and cope with all sorts of "people issues" and I had never seen anything like this.
The diagnosis eventually happened months later, with perseverance and patience, But things do not happen fast and I suppose years can go by and so much grief and pain is felt by families.
In my case, my wife had a dream where she felt sure I was going to kill her and our dog, then alerted all of her business colleagues. I then had the police arrive, assuming that my wife was in danger and it took two hours to put them in the picture. But that ratcheted things up quickly and I suppose all sorts of H&S boxes were ticked. My wife was later visited by a team and assessed and taken away. That was one year ago and she is now in a care home and steadily going downhill. She is a `different person to chat with, the different meds change behaviour in many ways and I am not really in her life now, after 49 years of marriage.
But its not all about me. Its all about my wife and her illness and I tell the family that we need to live in her new world, what she believes and likes, show her the same love and attention as before.
Its tough on partners. I keep myself busy with work and I have a young staffy for company, sold the house and moved back to just across the road from where I met my wife and so I still have those wonderful memories. I have learned that tears can be endless, that its good to have a little weep alone, to keep close to family members and to support them as needed.
The point I am trying to make is that the urgency and worry felt by a family is not shared by doctors and others. You end up in a queue, feel forgotten and alone, the illness gets worse and your days are full of stress. The NHS budget is a shrinking one and dementia care is not seen as urgent.
Do push and push and call and remind staff that things are going downhill and that you need help and support but mostly some sort of a plan for the future.
Good luck to all, Jack
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,655
0
Kent
Your experience is a disgrace @JackReacher and I suppose it is only because your wife was present that stopped you exploding.

Apart from having to wait 12 months for a diagnosis while my husband was treated with a variety of antidepressants, our GP at least was sensitive to his discomfort as were the consultants we saw later.

Our experience began in 2005 and the NHS was much healthier then.
 

JackReacher

Registered User
Oct 22, 2022
26
0
I suppose its like damaging your back and then being referred to a clinic for treatment. You sit in the waiting room and look around. Maybe 20+ people, all with a back problem. Its not until then that you realise how common back injuries are!
Same with Dementia. Only when my wife became ill did I start to realise how widespread the illness is and getting worse as people are living longer but still deteriorating.
The Government know there will be a massive need for more funding and I suppose the positive from that is that they may invest in better drugs to slow down the decline or better treat the effects. Thus saving on care costs.
But of course the patient is not the only one affected and most families struggle through for years, crippled by costs and worry, determined to somehow care for the person they have loved all their lives.
All real heroes and none will get a medal, Jack