Say hello and introduce yourself

[Izzy]

Welcome to the forum @Ronnie G.

I’m so sorry to read about your diagnosis. I’m glad you found this forum. I’m sure you’ll find good support here. I wondered if the dementia guide would be of use to you -

The dementia guide: Living well after your diagnosis

Have you recently been diagnosed with dementia? Get your copy of the latest version of our dementia guide. It has lots of tips and advice to help you live well with dementia and keeping doing the activities that you enjoy.

www.alzheimers.org.uk

 

[Jonathan73]

Hello.
I'm Jon. My mum was diagnosed with Alzheimer's a few years ago. She's 90 and lives with me right now. The Memory Clinic are looking at what further support they can arrange. She suffered a significant deterioration a few weeks ago. Before, there were occasional incidents and increasing issues relating to her memory. She then stopped being able to string sentences together. The doctor thought that might be an infection. Whilst the ability to speak returned quickly, she struggles far more now. I had the shopping delivered and spent the rest of the day with her, and she was clearly agitated that I spent 20 minutes running the car to make sure it would run okay. I spent 12 hours with her yesterday, and when I went upstairs, she followed me within 15 minutes, later becoming distressed and angry that I had left her alone all day and night.
I've had the chance to read several threads on here and they've been very helpful. Thank you to everyone who has posted. All the very best. It is one of the most difficult things I have known.

 

[Louise7]

Hello @Jonathan73 and welcome to the Dementia Support Forum but sorry to hear about your mum. If she did have an infection these can cause quite a big downturn in someone with dementia and sometimes the person may not return to how they were previously. Dementia is definitely a very difficult condition to deal with, and as a carer for your mum it's important to look after yourself too. I hope that the memory clinic will be able to provide additional help and support for you, and you will also find plenty of friendly help and support here from other forum members, who understand and are happy to help when they can. There's always someone here to listen. If you haven't already done so it may be useful to contact your local Adult Social Services team to request a care needs assessment for your mum and a carer assessment for yourself to see what support they may be able to offer you. Details here:

The care needs assessment: support for people with dementia

This page looks at how a person with dementia can get a care assessment, who does an assessment, how they are carried out, who makes the decision, and tips for making the most of the care needs assessment. It also explains the eligibility criteria.

www.alzheimers.org.uk

 

[Jonathan73]

Hello @Jonathan73 and welcome to the Dementia Support Forum but sorry to hear about your mum. If she did have an infection these can cause quite a big downturn in someone with dementia and sometimes the person may not return to how they were previously. Dementia is definitely a very difficult condition to deal with, and as a carer for your mum it's important to look after yourself too. I hope that the memory clinic will be able to provide additional help and support for you, and you will also find plenty of friendly help and support here from other forum members, who understand and are happy to help when they can. There's always someone here to listen. If you haven't already done so it may be useful to contact your local Adult Social Services team to request a care needs assessment for your mum and a carer assessment for yourself to see what support they may be able to offer you. Details here:

Many thanks, Louise. I actually had a call about getting Social Services involved this morning. I will have a careful read through now. Thank you very much.

 

[Robertwmaclean]

Hi
My husband has dimensia he talks daily with an image in the mirror. Any help. I just let him carry on but then he said make a cup of tea for my friend

 

[Sarasa]

A warm welcome to Dementia Support Forum @Robertwmaclean. This is a very friendly and supportive site and I'm glad you've found us.
I guess your husband no longer recognises himself in the mirror and thinks he is talking to a real person. If it doesn't cause him any distress you can just say something like 'oh they've had to leave now, but shall we have a cup of tea instead?' If it is causing distress then maybe covering mirrors will be needed.
When you feel ready you might like to start your own thread in the I care for a person with dementia part of the forum.

 

[maggie6445]

Hi
My husband has dimensia he talks daily with an image in the mirror. Any help. I just let him carry on but then he said make a cup of tea for my friend

Hello @Robertwmaclean ,, my OH talks to himself in the mirror as well. He says the old man is his friend. He smiles and 👍 when he sees him😂

He also thinks there's another carer as well as me and I think it's because he sees me in the mirrors.

He doesn't get distressed so I let him chat away.

He can no longer make drinks but when he could he regularly made his friend and the other carer coffee.😊

 

[ekrasaro7]

Hi, my name is Lizzie. My grandmother was diagnosed with dementia a few years ago. I'm not sure what kind and I admittedly don't know much about the disease. I recently started doing some more research because signs of the disease have been more evident (ie asking the same questions over and over again, thinking I'm still in college even though I graduated 3 years ago, forgetting my childhood dog that passed last summer etc). Usually I can just brush this off but it seems to be advancing recently which has been tough.

My parents recently sold our childhood home. We were at a family lunch and my grandmother asked my teenage cousin if she misses the house she grew up in. My cousin never lived with us and actually still lives in her childhood home in the next state. This was the first instance I've witnessed of her mixing up who she was talking to. I found comfort in one of the forums here saying that people with dementia are still able to recognize love and positive feelings associated with a person even after they start to forget the specifics.

 

[northumbrian_k]

Hi @ekrasaro7 and welcome to the Forum. Thankyou for sharing your story. I am sorry to hear about your grandmother but know that you will find comfort and support from this great community. Come here if you have questions, need to share with people who truly understand, to learn from the experience of others, or to let off steam.

 

[claire and sean]

Hello new here and confused

 

[northumbrian_k]

Hi @claire and sean

Welcome to the Forum, our friendly and helpful community. Let us know what you are confused about and explain a little about your circumstances. We will do our best to help.

 

[Gosling]

Hello @claire and sean and welcome to this friendly and supportive forum.
There is a wealth of shared experience of dementia here so I am glad you have found us.
You may want to start a new thread in the following section of the forum, telling us a little more about your particular situation; then members can more readily help with useful suggestions etc.

I care for a person with dementia

This forum is for people who are involved in the care of a person with dementia.

forum.alzheimers.org.uk

There is always total understanding here, and members really do want to help,

 

[charonvirgajuno]

My Grandmother died at the end of last year. I live several hours away from my hometown and I found it shocking to see how much she deteriorated between my visits. It’s like my friend, my reason to visit has gone & it has made me question the relationship I had with my own parents.

 

[SeaSwallow]

My Grandmother died at the end of last year. I live several hours away from my hometown and I found it shocking to see how much she deteriorated between my visits. It’s like my friend, my reason to visit has gone & it has made me question the relationship I had with my own parents.

Hello @charonvirgajuno and welcome to the Dementia Support Forum. I am so sorry to hear that your Grandmother passed away last year. You obviously had a very close relationship with her. Perhaps you could tell us how you feel that this has affected your relationship with your parents so that we can offer you some advice if you think that would help.

 

[GuyB]

Hi
My wife was diagnosed with Alzheimer's the week before Christmas (23) after many years (5-10) of not being her normal self. She's in denial and has definitely deteriorated in the last four weeks. She's 73 in June and is waiting on DVLA for a driving licence decision which is causing a considerable amount of anxiety and stress for us both.
I have respiratory issues that mean I can't do some stuff but have lead a pretty normal life up to now.

Currently exploring my anxiety attacks as I sometimes get very breathless for no obvious reason. The doc says my chest has not deteriorated so I have to explore other avenues.

As with all forums I hope to benefit from being a member and also contribute to the general discussion.

Guy

 

[Izzy]

Welcome to the forum @GuyB.

I'm sorry to hear about your wife's diagnosis. It must be hard for you both.

It's good that you've found this forum. It's a safe place to ask questions and share your concerns. You'll find members always ready to share their own experiences in order to support.

 

[charonvirgajuno]

Hello @charonvirgajuno and welcome to the Dementia Support Forum. I am so sorry to hear that your Grandmother passed away last year. You obviously had a very close relationship with her. Perhaps you could tell us how you feel that this has affected your relationship with your parents so that we can offer you some advice if you think that would help.

Thank you. Looking back, I (now 28M), grew up in a very unstable household. When things got bad, my grandmother’s house was a place I could turn to for safety and calm. She cooked me dinner and always told me to “not listen” to my father. She understood me, I was so ashamed of what was happening at home, she was the only person I trusted.

I live away now, and have done for so 10 years however I have all these mixed emotions, guilt about not spending more time with her in the last months of her life, that as she started to become more confused, I stopped interacting so much with her. I’ve also now lost this person of trust and I don’t feel like I can open up to other people in my life about my past.

 

[SeaSwallow]

Thank you. Looking back, I (now 28M), grew up in a very unstable household. When things got bad, my grandmother’s house was a place I could turn to for safety and calm. She cooked me dinner and always told me to “not listen” to my father. She understood me, I was so ashamed of what was happening at home, she was the only person I trusted.

I live away now, and have done for so 10 years however I have all these mixed emotions, guilt about not spending more time with her in the last months of her life, that as she started to become more confused, I stopped interacting so much with her. I’ve also now lost this person of trust and I don’t feel like I can open up to other people in my life about my past.

Oh dear @charonvirgajuno you have been through so much at such a young age. I am sure that your grandmother understood just how you were feeling during her last months and you have no need to feel guilty.
It might be an idea to approach your doctor to see if they can refer you for counselling to deal with any resolved issues as a result of your difficult childhood. Please think about this. Take care of yourself.

 

[skraps04]

Hello, all. I have been suffering with a ton of strange symptoms. The only thing that really seems to cover almost all of my symptoms is frontotemperal dementia. Starting with behavioral and personality changes several years ago to now. I've had a rapid decline in my physical health in the last 4 weeks. I can now barely get out of bed unassisted. I have trouble walking, feel very unsteady which makes me dizzy, difficulty swallowing, along with feeling as though I can't control my limbs at times. My memory is going, I have trouble finding the words I want to use. I'm scared and I need help getting diagnosed. Doctors won't even consider the diagnostic tests because they say I'm too young but I have been treated by many doctors over the years and it seems like they just put a bandage over each symptom without considering that I'm also far too young for the diagnoses I already have. How do I get doctors to help me? I'm getting severely depressed having to navigate life without a diagnosis. I'm only 38 and am deteriorating faster than they can bandage now. Help

 

[Louise7]

Hello @skraps04 and welcome to the Dementia Support Forum, although sorry to hear about the problems you are having with your health, it must be worrying for you. There may be other things that could be causing your symptoms, not just FTD, so try to avoid looking up various symptoms on-line if you can as that can result in anxiety. It might be helpful for you to keep a diary of exactly what is happening and when, to show to your doctor. You mention that the doctors won't consider diagnostic tests, and you are depressed about not getting a diagnosis. Have the doctors carried out any other tests such as blood tests or physical examinations? It must be frustrating for you, and if you are based in the UK it might be helpful for you to contact the Dementia Support Line as they will listen and hopefully be able to suggest a way forward for you. They are open at the weekend, details here:

Dementia Support Line

If you need dementia support, we’re here for you. Get personalised information, support and advice by calling us on 0333 150 3456.

www.alzheimers.org.uk

We have a forum specifically for those who have memory concerns and are seeking a diagnosis so you may find some useful information there, plus members with personal experience of FTD may respond too:

Memory concerns and seeking a diagnosis

This forum is for people who have concerns about their memory or someone else’s.

forum.alzheimers.org.uk