Say hello and introduce yourself

[HarrietD]

Welcome to Dementia Support Forum

However you have been affected by dementia, our community is a place to get support from others.

Say hello

This is our welcome thread - the place many members start. Our volunteers and regular members are here to say hello to you and to welcome you to our community.

This thread is for you to say hello and tell us a little bit about yourself, and your connection to dementia.

Whatever you're facing today, we hope you find our community to be helpful and supportive.

How to use the community

To post a new thread:

1. Click here to see the list of forums on the homepage. Under 'Support from other members' you'll find a list of different areas of the community. Choose the one which seems most relevant to you or your question.
2. Click on the yellow button that says 'Post thread'.
3. Type in a title and then write your message in the text box. Once you've done that, click on the yellow button that says 'Post thread'. Other members will now be able to reply to you

Any questions?

If you have any questions, you can email us on DementiaSupportForum@alzheimers.org.uk - we're here to help.

 

[Bel123]

Hello,
My brother was diagnosed with Alzheimer's last year. He is now in a home and being cared for. Unfortunately it is 4.5 hours minimum drive for me and, as I work full time and run a business from home, it isn't easy to get to see him. I'm 61 and he is 73 - such a ruthless illness.
His erstwhile 'girlfriend' has POA. I use this term loosely as she is a strange lady who doesn't want to communicate with most of our family - especially me. This makes all communication difficult, but, more importantly, I am concerned for his finances. I would really appreciate any advice available in this area.
Thank you
B

 

[Louise7]

Hello @Bel123 and welcome to the Dementia Support Forum. It sounds a difficult situation for you, particularly being such a long distance away from your brother and it not being easy to see him. It would be helpful if you could provide a little more information about what your concerns are about his finances, for example the details of anything specific that has caused you to worry. People here are happy to provide advice and support but some more information would be helpful. Perhaps post in the 'Legal and Financial issues' area and tell us a bit more about what's happening?

Legal and financial issues

This forum is a place to discuss personal experiences in relation to financial, legal and benefits issues. Legal or financial information posted in an advisory capacity, or to promote goods or services, will be removed.

forum.alzheimers.org.uk

 

[Scott1970]

Hi
We have just found out the my mum has Alzheimer's and I am devastated. She had a stroke in July 2022 and her memory and personality has changed since then. I now feel extremely guilty as I have been quite impatient with her.
I do not know where to go for support or advice on how to deal with this and feel so alone even though I have an amazing husband, neither of us have a clue!

 

[Izzy]

Welcome to the forum @Scott1970.

I’m so sorry to read about your mum. You must be reeling just now.

I’m glad you’ve found this forum. You will always find someone here to listen to your concerns and offer their own experiences in support. You might find it helpful to start your own thread in The I Care For A Person With Dementia area of the forum. That way you can ask questions, share concerns , get things off your chest and also keep all of the responses you receive in one place -

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

You can find lots of information sheets etc on the Alzheimer’s Society’s main forum but I don’t want to bombard you just now. You must already be feel like your head is spinning. Having said that you might find the Dementia Guide useful -

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

 

[Jill18]

Hello! My name is Jill. I have a lot of personal experiences with dementia. My grandma had it and was living in a memory care when I started college. Before I could finish college I had to come home and be the primary caregiver for my dad who was rapidly decline from his recent mild cognitive impairement diagnosis and PPA. I cared for him for 4.5 years before he had to move into a memory care. He was kicked out of 4 adult day cares and 5 home health aids quit. In less than 8 months, he was kicked out of 2 assisted living memory cares, had 3 Geri psych unit stays for 3-4 weeks each time, and ended up having to live in one of the 4 state run Geri psych nursing homes before passing away. He did pass away before his mom who was also living with dementia and has been in a memory care for the last 5 years. I love being able to use my personal experiences to help families that are starting their journey with dementia. It is not just the resident that needs support, engagement, and love. This is not an easy journey but I love when I can make things a little easier for someone.

 

[Want some sleep]

Hello, I’m Joyce. My husband has Dementia as well as Parkinson’s. He cannot feed or dress himself and cannot bath or use the bathroom without 100% assistance. I am his caregiver and have been since he was hit in the head 7 years ago. My health is declining due to the tremendous amount of work that I deal with everyday. Because of this I am selling our house so we can move into a smaller home that needs less up keep. Our daughter, who has recently started speaking to us after 12 years of silence, says it’s too much for her and has basically checked out. It’s hard to do everything alone especially packing up a house. I’ve asked for help but when its given then the countless physical ailments that she gets afterward are my fault. So Ive stopped asking. As a result I broke my wrist trying to move something very heavy. It’s not healing due to the fact that I have to use it because there is so much that needs doing. My husband gets irritated with me over basically anything but has no concern for my wellbeing at all. I want to cry most of the time. It would make sense for me to get help but there is none available. He cannot walk so he needs 24/7 care and I cannot pay for someone to come in to help. I just need some sleep….and someone to talk too. Thanks for listening. BTW he is 68 and I am 63. I am disabled as well but I want to give him the best care that I can.

 

[Kevinl]

Hello Joyce and welcome, I don't know what to say, something over 12 years on the site here as a carer and for the first time have a virtual cuddle from me, here (((((hugs))))) and thank you for all you're doing.
K

 

[Want some sleep]

Hello Joyce and welcome, I don't know what to say, something over 12 years on the site here as a carer and for the first time have a virtual cuddle from me, here (((((hugs))))) and thank you for all you're doing.
K

Thank you for the virtual cuddle and kindness Kevini. I think that’s pretty much all I needed was a kind word. I re-read my post and have to apologize for complaining. Last night was difficult and I let it all out here. It’s wonderful having sites like this where there are others who understand the daily life of a caregiver. Dementia is difficult and sad. It’s so hard to see the person you love slowly draining away. Plus lack of sleep seems to make everything much harder. Right now Im looking forward to dawn and the new day. The reset that comes with each new morning makes it possible too keep going and continue loving the person you are caring for. After all, that’s the bottom line for me and I’m sure it’s the same for everyone here. You love the person you’re caring for and want the best for them. My husband is a wonderful person. Even tho that person is hidden deep inside a broken brain I know who he is and i still love him very very much. Have a good day today and thank you again for the encouragement .

 

[SeaSwallow]

Thank you for the virtual cuddle and kindness Kevini. I think that’s pretty much all I needed was a kind word. I re-read my post and have to apologize for complaining. Last night was difficult and I let it all out here. It’s wonderful having sites like this where there are others who understand the daily life of a caregiver. Dementia is difficult and sad. It’s so hard to see the person you love slowly draining away. Plus lack of sleep seems to make everything much harder. Right now Im looking forward to dawn and the new day. The reset that comes with each new morning makes it possible too keep going and continue loving the person you are caring for. After all, that’s the bottom line for me and I’m sure it’s the same for everyone here. You love the person you’re caring for and want the best for them. My husband is a wonderful person. Even tho that person is hidden deep inside a broken brain I know who he is and i still love him very very much. Have a good day today and thank you again for the encouragement .

Hello @Want some sleep and welcome to the Dementia Support Forum. You do not have to apologise for complaining, you have a lot to deal with at present. From your use of the term 'caregiver' i am assuming that you live in the US. This is a UK based site but we have members from all over the world, the effects of dementia are the same wherever we live. However we could not advise you of what help might be available to you so I have attached a link to the Alzheimer's Association. it might be useful to contact them to see if they can offer help.

Home | Alzheimer's Association

Alzheimer's Association national site – information on Alzheimer's disease and dementia symptoms, diagnosis, stages, treatment, care and support resources.

www.alz.org

Please keep posting on the forum, either to ask questions or even just to let off steam, you will always find someone willing to help. It might be useful to start your own thread in the i have a partner with dementia area. Again i have attached a link.

I have a partner with dementia

This forum is for people with a partner or spouse with dementia.

forum.alzheimers.org.uk

 

[GinSalt5829]

Hello I'm Gin

 

[GinSalt5829]

Hello I'm Gin

 

[GinSalt5829]

My husband has dimensia

Hello, I’m Joyce. My husband has Dementia as well as Parkinson’s. He cannot feed or dress himself and cannot bath or use the bathroom without 100% assistance. I am his caregiver and have been since he was hit in the head 7 years ago. My health is declining due to the tremendous amount of work that I deal with everyday. Because of this I am selling our house so we can move into a smaller home that needs less up keep. Our daughter, who has recently started speaking to us after 12 years of silence, says it’s too much for her and has basically checked out. It’s hard to do everything alone especially packing up a house. I’ve asked for help but when its given then the countless physical ailments that she gets afterward are my fault. So Ive stopped asking. As a result I broke my wrist trying to move something very heavy. It’s not healing due to the fact that I have to use it because there is so much that needs doing. My husband gets irritated with me over basically anything but has no concern for my wellbeing at all. I want to cry most of the time. It would make sense for me to get help but there is none available. He cannot walk so he needs 24/7 care and I cannot pay for someone to come in to help. I just need some sleep….and someone to talk too. Thanks for listening. BTW he is 68 and I am 63. I am disabled as well but I want to give him the best care that I can.

I totally hear you I'm 70 and my husband with Dimensia is taken a toll on me

 

[Kevinl]

Hello Gin, you'll find this place a tonic. Sorry couldn't resist saying that, meanwhile hello and welcome. K

 

[Gosling]

Hello @GinSalt5829 and welcome to this friendly and supportive forum.
I am sorry to read about your husband. It's tough for sure, being a main carer for a loved one. It certainly does take its toll, both emotionally and physically.
Perhaps, if you would like to, share a bit more of your situation in the following section of the forum.

I have a partner with dementia

This forum is for people with a partner or spouse with dementia.

forum.alzheimers.org.uk

Some members find it helps just putting things down on here sometimes. Members here really do understand and want to help.

 

[WeeB]

Hello,

I just joined. My mum got an Alzheimer's diagnosis last summer, but she has had symptoms for several years now. I thought I'd just say hello as requested.

Billy

 

[Kevinl]

Hello too. K

 

[Chizz]

Hello, I’m Joyce. My husband has Dementia as well as Parkinson’s. He cannot feed or dress himself and cannot bath or use the bathroom without 100% assistance. I am his caregiver and have been since he was hit in the head 7 years ago. My health is declining due to the tremendous amount of work that I deal with everyday. Because of this I am selling our house so we can move into a smaller home that needs less up keep. Our daughter, who has recently started speaking to us after 12 years of silence, says it’s too much for her and has basically checked out. It’s hard to do everything alone especially packing up a house. I’ve asked for help but when its given then the countless physical ailments that she gets afterward are my fault. So Ive stopped asking. As a result I broke my wrist trying to move something very heavy. It’s not healing due to the fact that I have to use it because there is so much that needs doing. My husband gets irritated with me over basically anything but has no concern for my wellbeing at all. I want to cry most of the time. It would make sense for me to get help but there is none available. He cannot walk so he needs 24/7 care and I cannot pay for someone to come in to help. I just need some sleep….and someone to talk too. Thanks for listening. BTW he is 68 and I am 63. I am disabled as well but I want to give him the best care that I can.

Hi @Want some sleep
You are not alone.
I've only been full time caring for my OH for 7 years now. Yes it v hard to maintain the house, the garden, and do all the jobs necessary to keep going apart from the caring, the washing, the toileting, the changing clothes, bedclothes, etc, etc, etc
So, when I decided I didn't want to become a patient as well I had to get carers to come in to help and relieve me of the pain and the strain. The result is gain in some time, some energy. It really is worth it, and having carers in is about a quarter of the cost of a care home..
A full time carer also needs breaks - I have a lovely lady from the charity Mind who comes to be with my OH for 3 hours per week so that I can escape for that time - invaluable! You must arrange such respite yourself.
You need to have the time and rest for your broken wrist to heal properly, otherwise it will cause you problems forever.
You also, IMHO, have to decide that you are not going to let yourself become a patient, which wouldn't help anybody. Look after yourself, mentally and physically - most important!
Best wishes, and a hug.

 

[Want some sleep]

Hi @Want some sleep
You are not alone.
I've only been full time caring for my OH for 7 years now. Yes it v hard to maintain the house, the garden, and do all the jobs necessary to keep going apart from the caring, the washing, the toileting, the changing clothes, bedclothes, etc, etc, etc
So, when I decided I didn't want to become a patient as well I had to get carers to come in to help and relieve me of the pain and the strain. The result is gain in some time, some energy. It really is worth it, and having carers in is about a quarter of the cost of a care home..
A full time carer also needs breaks - I have a lovely lady from the charity Mind who comes to be with my OH for 3 hours per week so that I can escape for that time - invaluable! You must arrange such respite yourself.
You need to have the time and rest for your broken wrist to heal properly, otherwise it will cause you problems forever.
You also, IMHO, have to decide that you are not going to let yourself become a patient, which wouldn't help anybody. Look after yourself, mentally and physically - most important!
Best wishes, and a hug.

Thank you so much for sharing your story. Your OH is very blessed to have you. I agree with you that me becoming a patient wouldn’t help anyone. We are selling our house so that we can move into a condo which will reduce my work load a lot. My daughter tells people that Im too protective of my husband and wont let her help. She has just come back in the past few months after not speaking to us for 12 years. So I am going to be protective of him. I have to protect him from people I know will hurt him. However; having carers come in is a different story. It would be helpful to get some experienced people come in to give me a break. My husband was admitted to the hospital on Monday due to non stop seizures. He will be going to rehab from here when he is discharged which will give me a break and some rest. I want to give a better reply but my brain just isn’t functioning smoothly right now. I just really want to say thanks. I appreciate hearing from people that are going through it or have gone through it ❤️

 

[Chizz]

Thank you so much for sharing your story. Your OH is very blessed to have you. I agree with you that me becoming a patient wouldn’t help anyone. We are selling our house so that we can move into a condo which will reduce my work load a lot. My daughter tells people that Im too protective of my husband and wont let her help. She has just come back in the past few months after not speaking to us for 12 years. So I am going to be protective of him. I have to protect him from people I know will hurt him. However; having carers come in is a different story. It would be helpful to get some experienced people come in to give me a break. My husband was admitted to the hospital on Monday due to non stop seizures. He will be going to rehab from here when he is discharged which will give me a break and some rest. I want to give a better reply but my brain just isn’t functioning smoothly right now. I just really want to say thanks. I appreciate hearing from people that are going through it or have gone through it ❤️

Hi @Want some sleep
I don't want to pry, nor do you have give any more details than you wish to, but...I don't know where you are, what your age is, what stage your OH is at, etc - all of which are relevant to how matters progress.
In UK when a patient in the condition of your OH, is to be discharged from hospital, usually the hospital won't discharge the patient without a care package being put in place. Thus, they would get a physio to assess the patient physically, and an occupational therapist to assess what the needs for care are and what equipment would be needed to give that care. If your OH is to be discharged to home, they will arrange carers and pay for them for the first 4 to 6 weeks, after which the costs are means tested. The occupational therapist will want to speak with you to assess your ability to give the care that's needed.
Similarly, if your OH is to be discharged to a rehab place, or care home, they will choose a place that they feel can meet your OH's needs, but if you really don't like or want that place they select then you'll have to have in mind an alternative place you want. Thus, you may need to do some homework in this regard. Again the health care system will pay any fees required for the first four to six weeks, after which the cost is means tested, and you'd have to decide whether your OH is to be at home or remain in a care home..
Best wishes.