Dad with dementia, family history and general questions

[SimonDevon]

Hello

I wasn't sure where to post this as it kind of covers multiple areas - apols to admin if its not correct, feel free to move it.

My dad (69) has recently been diagnosed after a year long series of tests/waits/scans/appointments with A-Typical Alzheimer's.

Last night was the first time I think it really sank in as I lay in bed and couldnt get to sleep.

My mum who is a few years younger than dad is currently caring for him. Although he can still hold a conversation etc it is becoming more noticeable that he gets muddled (ie isn't sure how to work the tv control or lately seems to talk about my mum - to my mum which is a bit odd).

My message has a number of different elements, if someone can help with advice on any I'd be grateful.

1 - My mum has been noticeably struggling - she looks very tired all the time understandably. She tells me that my dad often goes to bed early and wakes up very early. Mum is a light sleeper so wakes up too and can't return to sleep. I managed to set up a meeting with a local care group who have been great with advice and now mum has applied for several allowances/funds and also got much in place that I wouldnt have thought of (things you carry so you're ID'd as a carer should anything happen etc). One of my worries last night (I feel very selfish) is should anything happen to my mum, what would I do re my Dad. I think this worry was a practical one. What would be my first things to do - obviously be there for him, but practically - speak to his solicitor? Mum has sorted LPA and I think that passes to me. I dont think Dad would be able to care for himself, so what would be the options, a home? Assisted accommodation of some kind? I know this is very "what if" thinking but it would ease my mind if I knew more about what would need to happen.

2 - What can I do to help my Dad - I've read lots of things about activities that are quite mindful (crafts, music, jigsaws etc) but in his "well" years none of these types of activities would have been of interest to dad. He is a very old-school Yorkshire man who was just always busy with doing work on the house, or he used to look after a pitch for a local football team - all very practical things. I did think maybe we could set aside some time each week and we could do work in their garden together but then I considered the weather might not be helpful in that regard at this time of year.

3 - I'm unsure if it's tiredness but I myself (42) seem to be getting more forgetful with things and often mix up names when saying hello to someone (or calling one of my children for the 20th time to do something). This could also be anxiety / trying to do a million things at once. Alzheimer's could run in my family as my Dad's mum had is as well as now my dad. Is there anything I can do to check my likelihood of developing it? Or anything preventative I could do?

Thank you all

 

[jugglingmum]

I note you haven't had a reply so hopefully this will be helpful, others might be along with more detail.

1. It is likely that your dad would need to go into a home if something happened to your mum but there isn't a lot of advance planning you can do as what he would need will depend on the stage his dementia is at. Make sure you know where the LPAs are, check if you are named as a replacement attorney (or maybe a joint one but your mum is actioning it). Also if you know how your mum has filed financial records so you can access them if needed.

You say your mum is struggling, please make sure she has support, for example encourage her to get a cleaner in if she has broken sleep and can't manage, or a sitter to befriend your dad so she gets some time to herself. She may be reluctant to pay, but better to pay for some support than collapse, carer's burnout it real.

2. Not sure I can suggest much on this. Try to do something with your dad that gives your mum respite. Perhaps gardening magazines, or model building kits at a level he could do. Or that you do for him. One member made airfix type models of planes whilst her dad watched. Would he go to the pub with you for a drink (maybe an alcohol free one)?

3. I think we all go through this phase, but I suspect the forgetting things is caused by stress and anxiety. The general preventative steps for dementia are healthy diet, exercise, healthy weight, not smoking, keeping the brain active, and socialising. Statistically these will help reduce your risk but won't override genetics or other factors. My gran and mum both had dementia (although both in their 80s) and I have decided worrying about it won't help. Young on-set dementia(under 65 I think) is more likely to be genetic but I haven't got much knowledge - and this is often mentioned at diagnosis if it is thought to be a factor.

Others might be along with different thoughts.

 

[SimonDevon]

Hiya
Thank you for taking the time to come back to me. All you’ve said is very useful. Interesting to pick up on the alcohol point - was that because it isn’t helpful for people with dementia?

Thanks!

 

[jimkd]

I note you haven't had a reply so hopefully this will be helpful, others might be along with more detail.

1. It is likely that your dad would need to go into a home if something happened to your mum but there isn't a lot of advance planning you can do as what he would need will depend on the stage his dementia is at. Make sure you know where the LPAs are, check if you are named as a replacement attorney (or maybe a joint one but your mum is actioning it). Also if you know how your mum has filed financial records so you can access them if needed.

You say your mum is struggling, please make sure she has support, for example encourage her to get a cleaner in if she has broken sleep and can't manage, or a sitter to befriend your dad so she gets some time to herself. She may be reluctant to pay, but better to pay for some support than collapse, carer's burnout it real.

2. Not sure I can suggest much on this. Try to do something with your dad that gives your mum respite. Perhaps gardening magazines, or model building kits at a level he could do. Or that you do for him. One member made airfix type models of planes whilst her dad watched. Would he go to the pub with you for a drink (maybe an alcohol free one)?

3. I think we all go through this phase, but I suspect the forgetting things is caused by stress and anxiety. The general preventative steps for dementia are healthy diet, exercise, healthy weight, not smoking, keeping the brain active, and socialising. Statistically these will help reduce your risk but won't override genetics or other factors. My gran and mum both had dementia (although both in their 80s) and I have decided worrying about it won't help. Young on-set dementia(under 65 I think) is more likely to be genetic but I haven't got much knowledge - and this is often mentioned at diagnosis if it is thought to be a factor.

Others might be along with different thoughts.

I note you haven't had a reply so hopefully this will be helpful, others might be along with more detail.

1. It is likely that your dad would need to go into a home if something happened to your mum but there isn't a lot of advance planning you can do as what he would need will depend on the stage his dementia is at. Make sure you know where the LPAs are, check if you are named as a replacement attorney (or maybe a joint one but your mum is actioning it). Also if you know how your mum has filed financial records so you can access them if needed.

You say your mum is struggling, please make sure she has support, for example encourage her to get a cleaner in if she has broken sleep and can't manage, or a sitter to befriend your dad so she gets some time to herself. She may be reluctant to pay, but better to pay for some support than collapse, carer's burnout it real.

2. Not sure I can suggest much on this. Try to do something with your dad that gives your mum respite. Perhaps gardening magazines, or model building kits at a level he could do. Or that you do for him. One member made airfix type models of planes whilst her dad watched. Would he go to the pub with you for a drink (maybe an alcohol free one)?

3. I think we all go through this phase, but I suspect the forgetting things is caused by stress and anxiety. The general preventative steps for dementia are healthy diet, exercise, healthy weight, not smoking, keeping the brain active, and socialising. Statistically these will help reduce your risk but won't override genetics or other factors. My gran and mum both had dementia (although both in their 80s) and I have decided worrying about it won't help. Young on-set dementia(under 65 I think) is more likely to be genetic but I haven't got much knowledge - and this is often mentioned at diagnosis if it is thought to be a factor.

Others might be along with different thoughts.

Hello

I wasn't sure where to post this as it kind of covers multiple areas - apols to admin if its not correct, feel free to move it.

My dad (69) has recently been diagnosed after a year long series of tests/waits/scans/appointments with A-Typical Alzheimer's.

Last night was the first time I think it really sank in as I lay in bed and couldnt get to sleep.

My mum who is a few years younger than dad is currently caring for him. Although he can still hold a conversation etc it is becoming more noticeable that he gets muddled (ie isn't sure how to work the tv control or lately seems to talk about my mum - to my mum which is a bit odd).

My message has a number of different elements, if someone can help with advice on any I'd be grateful.

1 - My mum has been noticeably struggling - she looks very tired all the time understandably. She tells me that my dad often goes to bed early and wakes up very early. Mum is a light sleeper so wakes up too and can't return to sleep. I managed to set up a meeting with a local care group who have been great with advice and now mum has applied for several allowances/funds and also got much in place that I wouldnt have thought of (things you carry so you're ID'd as a carer should anything happen etc). One of my worries last night (I feel very selfish) is should anything happen to my mum, what would I do re my Dad. I think this worry was a practical one. What would be my first things to do - obviously be there for him, but practically - speak to his solicitor? Mum has sorted LPA and I think that passes to me. I dont think Dad would be able to care for himself, so what would be the options, a home? Assisted accommodation of some kind? I know this is very "what if" thinking but it would ease my mind if I knew more about what would need to happen.

2 - What can I do to help my Dad - I've read lots of things about activities that are quite mindful (crafts, music, jigsaws etc) but in his "well" years none of these types of activities would have been of interest to dad. He is a very old-school Yorkshire man who was just always busy with doing work on the house, or he used to look after a pitch for a local football team - all very practical things. I did think maybe we could set aside some time each week and we could do work in their garden together but then I considered the weather might not be helpful in that regard at this time of year.

3 - I'm unsure if it's tiredness but I myself (42) seem to be getting more forgetful with things and often mix up names when saying hello to someone (or calling one of my children for the 20th time to do something). This could also be anxiety / trying to do a million things at once. Alzheimer's could run in my family as my Dad's mum had is as well as now my dad. Is there anything I can do to check my likelihood of developing it? Or anything preventative I could do?

Thank you all

Your dad would go into care if an assessment decided he was at risk to himself or others. While your mother is acting as a carer the assessment might say the risks were mitigated by her. Be watchful as the stress and burden on your mother can get excessive and impact her mental and physical health, she might not be able at some point to physically stop your father for example leaving the house during the night. It might be helpful to replace their tea and coffee supplies with de-caff so they sleep better. Stress does impact memory so dont worry too much .

 

[SeaSwallow]

Hello @SimonDevon I am sorry to read about your dads diagnosis of dementia. You have been given some good advice from @jugglingmum but there are just a couple of things that I would like to add.
In part 1 you state that your mum had sorted the LPA and that if anything happened to her the LPA would pass to you. This would not in effect happen unless you are already named as an attorney, please check if this is the case.
If your mum has not already done so it would be a good idea to contact her local authority to arrange a needs assessment for your dad and a carers assessment for herself. I have attached a link which you might find useful.

The carer's assessment: support for carers

This page looks at how a carer for 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

Please keep posting if you need any further advice.

 

[Cardinal]

I care for my husband. I also took care of my mom (who had Alzheimer’s). My mom shared no financial information with me. Here’s how I handle things with my husband and daughter.

1. For the legal and financial stuff ask your mom if she would be willing to let you go with her to the solicitor and review everything thing. Your mom may be more willing to do this if you offer to pay for the visit. If she says no at least go over the concerns you’ve mentioned here.

Offer to stay with your dad so your mom can have a break.

2. My husband will not do anything unless I do it with him. He loves doing any activity that I also do along side him. Just plan activities that you do with your dad. My husband loves the attention regardless of what the activity is. Also include your mom. I would love having my daughter take me out to lunch once in awhile.

3. Everyone worries about their memory when they have family members with dementia. There is a book: Keep Sharp: Build a better brain at any age by Sanjay Gupta that I found helpful. I don’t know if it is available in the UK.

 

[canary]

Interesting to pick up on the alcohol point - was that because it isn’t helpful for people with dementia?

Alcohol seems to have a greater effect on people with dementia that it would do on others

 

[Claire G]

Hello

I wasn't sure where to post this as it kind of covers multiple areas - apols to admin if its not correct, feel free to move it.

My dad (69) has recently been diagnosed after a year long series of tests/waits/scans/appointments with A-Typical Alzheimer's.

Last night was the first time I think it really sank in as I lay in bed and couldnt get to sleep.

My mum who is a few years younger than dad is currently caring for him. Although he can still hold a conversation etc it is becoming more noticeable that he gets muddled (ie isn't sure how to work the tv control or lately seems to talk about my mum - to my mum which is a bit odd).

My message has a number of different elements, if someone can help with advice on any I'd be grateful.

1 - My mum has been noticeably struggling - she looks very tired all the time understandably. She tells me that my dad often goes to bed early and wakes up very early. Mum is a light sleeper so wakes up too and can't return to sleep. I managed to set up a meeting with a local care group who have been great with advice and now mum has applied for several allowances/funds and also got much in place that I wouldnt have thought of (things you carry so you're ID'd as a carer should anything happen etc). One of my worries last night (I feel very selfish) is should anything happen to my mum, what would I do re my Dad. I think this worry was a practical one. What would be my first things to do - obviously be there for him, but practically - speak to his solicitor? Mum has sorted LPA and I think that passes to me. I dont think Dad would be able to care for himself, so what would be the options, a home? Assisted accommodation of some kind? I know this is very "what if" thinking but it would ease my mind if I knew more about what would need to happen.

2 - What can I do to help my Dad - I've read lots of things about activities that are quite mindful (crafts, music, jigsaws etc) but in his "well" years none of these types of activities would have been of interest to dad. He is a very old-school Yorkshire man who was just always busy with doing work on the house, or he used to look after a pitch for a local football team - all very practical things. I did think maybe we could set aside some time each week and we could do work in their garden together but then I considered the weather might not be helpful in that regard at this time of year.

3 - I'm unsure if it's tiredness but I myself (42) seem to be getting more forgetful with things and often mix up names when saying hello to someone (or calling one of my children for the 20th time to do something). This could also be anxiety / trying to do a million things at once. Alzheimer's could run in my family as my Dad's mum had is as well as now my dad. Is there anything I can do to check my likelihood of developing it? Or anything preventative I could do?

Thank you all