New and puzzled

[Mary 85]

My husband was diagnosed a few months ago. After the initial shock of diagnosis, all went, more or less, back to normal and and I want it to be so which makes me forget that I have to plan and organise for the future that is awaiting us. How soon will there be a change? What should I be doing? I am doing the legal things like power of attorney and will. What else should I be doing? I feel lost and in denial.

 

[canary]

Hello @Mary 85 and welcome to Talking Point.

Im afraid that it is impossible to give a timeline about what will happen when, and how long various stages will last. Every person with dementia will be different, although the general trend and various symptoms and changes will be common along the way.

If youve got a diagnosis, then there will already have been changes, but usually in the early stages the changes happen quite slowly and we as carers adapt to them, almost without thinking about it. As time goes on, though, the challenges will become harder to deal with and when this happens the best thing is to ask for advice here on how to cope with things as they occur.

You are doing the right thing with getting legal stuff like POA and will organised early, long before you will need them. They will become invaluable later on.
You might lso want to look into getting Attendance Allowance and once you have that you can get Council Tax disregard. Do get help from somewhere like Age UK or Citizens Advice in filling in the forms as it is very easy to downplay the person with dementias needs.

In the meantime, enjoy the good years and dont worry too much about the future
xx

 

[Mary 85]

Hello @Mary 85 and welcome to Talking Point.

Im afraid that it is impossible to give a timeline about what will happen when, and how long various stages will last. Every person with dementia will be different, although the general trend and various symptoms and changes will be common along the way.

If youve got a diagnosis, then there will already have been changes, but usually in the early stages the changes happen quite slowly and we as carers adapt to them, almost without thinking about it. As time goes on, though, the challenges will become harder to deal with and when this happens the best thing is to ask for advice here on how to cope with things as they occur.

You are doing the right thing with getting legal stuff like POA and will organised early, long before you will need them. They will become invaluable later on.
You might lso want to look into getting Attendance Allowance and once you have that you can get Council Tax disregard. Do get help from somewhere like Age UK or Citizens Advice in filling in the forms as it is very easy to downplay the person with dementias needs.

In the meantime, enjoy the good years and dont worry too much about the future
xx

Hello and thanks for your reply.

Yes, there are a few changes but not very big ones. He can still drive for instance but he gets more stressed than usual and I have to be giving directions which stresses me out too. He let DVLA know and they said they will get in touch with the doctor who did the diagnosis. We haven't heard about the outcome yet.

I read about Attendance Allowance but it must be for the middle or later stage.

Thanks again and best wishes,

xx

 

[jennifer1967]

Hello and thanks for your reply.

Yes, there are a few changes but not very big ones. He can still drive for instance but he gets more stressed than usual and I have to be giving directions which stresses me out too. He let DVLA know and they said they will get in touch with the doctor who did the diagnosis. We haven't heard about the outcome yet.

I read about Attendance Allowance but it must be for the middle or later stage.

Thanks again and best wishes,

xx

no attendance allowance is for all of the illness. i think they have to have it for 6 months . i claimed attendance allowance about 6 months after diagnosis. would definitely ask age uk or cab for help with this. it doesnt have to be hands on care but could be prompts to have meds, change clothes, wash etc which is still caring. dont worry too much asbout the future and just deal with things as they arise. otherwise you may worry about things that dont happen or are a problem.

 

[Mary 85]

no attendance allowance is for all of the illness. i think they have to have it for 6 months . i claimed attendance allowance about 6 months after diagnosis. would definitely ask age uk or cab for help with this. it doesnt have to be hands on care but could be prompts to have meds, change clothes, wash etc which is still caring. dont worry too much asbout the future and just deal with things as they arise. otherwise you may worry about things that dont happen or are a problem.

Thanks for that Jennifer but my husband doesn't like the idea. He says he doesn't have dementia, he has Alzheimer's and that I am not caring for him! He gets really annoyed when I come out with information. He is still leaving the POA application for later. He doesn't want to agree to POA because he thinks I will start taking control. I told him that is just for the later stages when he is really unwell. It is getting hard to get him do things. But I will take your advice and ask Age UK about it. Thanks again.

 

[jennifer1967]

Thanks for that Jennifer but my husband doesn't like the idea. He says he doesn't have dementia, he has Alzheimer's and that I am not caring for him! He gets really annoyed when I come out with information. He is still leaving the POA application for later. He doesn't want to agree to POA because he thinks I will start taking control. I told him that is just for the later stages when he is really unwell. It is getting hard to get him do things. But I will take your advice and ask Age UK about it. Thanks again.

could you do a poa for both of you then he wont feel on his own. i have poa for my husband for finance and health. he has capacity so able to make decisions but can also ask me to take over. so he has a choice of dealing with things himself or leave it to me so im giving him more choice and not less. the doctors etc will ask him what he would like. there is a part of the AA form that asks when they want the poa to take over. he likes the idea that his wishes will be given even when he can no longer express them himself.

 

[SAP]

This may or may not help to show your husband this but my hubby and I have our LPAs in place and neither of us have a life limiting condition. We have done this just in case. I got this sorted for my mum very early on and it was the very best thing I did , when the time came, I just took on responsibilities she could no longer manage.
For yourself, it may be worth looking to see if you have a local carers centre for support,if it now but in the future.

Support where you live | Carers UK

www.carersuk.org

 

[canary]

He is still leaving the POA application for later. He doesn't want to agree to POA because he thinks I will start taking control.

Im afraid that many people with Alzheimers or other dementias do not believe that they have changed at all and many will deny their diagnosis. My mum absolutely refused to give POA so eventually I had to apply to the Court of Protection for deputyship, which was a right faff and took a long time.

After this I decided I had to get my OH to give me POA, so I did the same as other posters have done and got my POA organised. I told OH what I was going to do, said it was important to do it "while we still had all out marbles" and that if something happened before we organised it then Social Services would take over (not totally true, but it did the job). He then decided he wanted it too. We had mirror POAs, but we put our two children on as well, because I know that if I needed someone to hold POA for me, OH wouldnt be able to do it and if something happened to me the children could then take over. However, it didnt make it look like OH was being treated any differently and he agreed.

 

[Banjomansmate]

I convinced The Banjoman to do his LPA by pointing out that if anything happened to him, an accident or a stroke then without LPAs in place the Court of Protection would take over and it would cost a lot of his money every year for them to run his affairs.
Money talks!

 

[Mary 85]

Thank you all very much for sharing and advice. It made things clearer to me. It is good to know that other people had a similar experience. I think the idea of an LPA for both should appear less threatening. Passing the info about the costs we might have to pay if the Court of Protection has to take over could also help. And yes, I need to find out if there is a local carers centre in our area.
Thank you all once again.

 

[Louise7]

Hello @Mary 85 welcome to Dementia Talking Point. This is a friendly place with lots of shared experience, and it's good to see that you have received a lot of useful advice already. You might also find this booklet useful to as it a really helpful guide to practical things such as benefits, power of attorney and support resources:

https://www.alzheimers.org.uk/sites...-a-person-with-dementia-a-practical-guide.pdf

This link will help you to find support services that are local to you:

https://www.alzheimers.org.uk/dementia-support-services

 

[Mary 85]

Hello @Mary 85 welcome to Dementia Talking Point. This is a friendly place with lots of shared experience, and it's good to see that you have received a lot of useful advice already. You might also find this booklet useful to as it a really helpful guide to practical things such as benefits, power of attorney and support resources:

https://www.alzheimers.org.uk/sites...-a-person-with-dementia-a-practical-guide.pdf

This link will help you to find support services that are local to you:

https://www.alzheimers.org.uk/dementia-support-services

Hello Louise,

I am glad and relieved to have found Dementia Talking Point. I keep learning a lot with my every visit. People are kind and supportive. I hope I will be able to help other people too.

I have a book where I keep all information and advice I receive from all these good people. I have noted down the links you sent me and thank you a lot for your help as well as making me feel welcomed.

Best wishes to you and yours,

Mary

 

[Sue741215]

Others may not agree because everyone is different but the things I would suggest to think about in addition to the legal aspects are:
Develop or hang onto a routine of going out separately - I believe (or perhaps hope) that if he is used to you going out without him he will accept it when he is feeling more vulnerable later. It will be invaluable for you too - you will care better if you can get away. I managed this by advertising for someone to take him out at lunchtime so he had something to look forward to - he is used to me going out first thing and returning after lunch.
On a similar note I would have a space in your home for yourself if you can - you might not need it now but are likely to further down the line. I was lucky that we spent time separately at home - he liked tv - I liked to read before his illness but I have been so glad to have my own space since his illness.
Learn that it is you who have to adapt to behaviour that drives you mad as he will not change. eg - when in the car my husband counts out loud vws, vans or lorries - I have been through the screaming at him to stop counting on a long journey stage (which didn't bother him at all but made me very stressed) and now just take my mind elsewhere.
Research support in your area - as it is provided by charities it varies.
If friends, relatives offer to help ask them for something specific and manageable - you know what will help you most they don't.
Build treats into your life to help with the monotony that can develop - if you can't get out arrange whatsapp calls with friends or relatives perhaps with a glass of wine or coffee and cake or just have what my daughter calls a pity party where she has cheese and wine on her own with a good tv programme if she is feeling down.
Use an app such as find my phone (I now call it find my husband) if he goes out alone if he is in the habit of carrying his phone - my husband has been amazing at remembering places and routes but sadly today got a bit lost while walking not far from home for the first time today.
Be open about the dementia - ( my husband doesn't recognise his illness either but he also doesn't listen ) so I am able to tell people and nearly everyone has a story to tell of someone they know with dementia and is understanding.

Everyone is different but the above have helped me to still have a goodish life and hopefully be a better carer in the early stages of the illness - whether they will help in the more difficult later stages only time will tell.

I wish you all the best in this difficult journey we and our loved ones face.

 

[Violet Jane]

@Sue741215 has given very good advice. I think that it’s natural, particularly with a spouse or partner, to keep the PWD close because you want to protect him/her / withdraw a bit from activities and socialising / be very private about the illness out of feelings of loyalty but if you do that you can become very isolated. It’s better to keep one’s own separate interests and friendships going for as long as possible and start getting some sort of help in - if you can afford it - so that the PWD gets used to ‘strangers’ coming into the home.

The thing about dementia is that people can live with it for a very long time and caring can, and often does, go on for years, perhaps for a decade or more, and so you have to pace yourself. My mother had dementia and I’m now supporting an elderly friend. Although I’ve never provided much hands-on care I’ve been closely involved with her for over 3 years and, tbh, I’m tired. Even though she now has 24-hour care at home - and we’ve been happy with the carers and the agency overall - there are always problems and matters to attend to as I am effectively acting as a next of kin as there’s nobody else. I developed an autoimmune disease at the beginning of last year and I suspect that the stress of dealing with it might have triggered it.

 

[Mary 85]

Thanks a lot @Sue741215 🌸 and Violet Jane 🌺for your valuable advice.

Fortunately I and husband are quite different people and are used to spending time on our own doing our own thing. Since my retirement I did a lot of travelling on my own and that is probably something I am going to miss. I can't see any of my adult children wanting to stay with him or take care of him, if I wanted to go away. At home, we rarely watch a film together or work in the same room. He is a proud and independent man who helps a lot at home and likes doing things his way. There is no way to make him change any of his habits! I imagine that getting him do something new or different could be a difficult task but one can't know how much his character could change in the future.

This year I will be sorting all the legal and practical matters as well as clearing the house so that it will be easier to manage. I will also research support and services in the area. This find the phone app sounds like a useful device. I will have to ask my son about it as I am not that good with technology.

Best wishes to all xx

 

[Sue741215]

Thanks a lot @Sue741215 🌸 and Violet Jane 🌺for your valuable advice.

Fortunately I and husband are quite different people and are used to spending time on our own doing our own thing. Since my retirement I did a lot of travelling on my own and that is probably something I am going to miss. I can't see any of my adult children wanting to stay with him or take care of him, if I wanted to go away. At home, we rarely watch a film together or work in the same room. He is a proud and independent man who helps a lot at home and likes doing things his way. There is no way to make him change any of his habits! I imagine that getting him do something new or different could be a difficult task but one can't know how much his character could change in the future.

This year I will be sorting all the legal and practical matters as well as clearing the house so that it will be easier to manage. I will also research support and services in the area. This find the phone app sounds like a useful device. I will have to ask my son about it as I am not that good with technology.

Best wishes to all xx

Good to hear that you and your husband are independent as I think it will help later on that he is used to being on his own even if just in another room.

I'm sorry you will have to give up your travelling but could you ask your children maybe to stay with him at least overnight so you can have a weekend away somewhere. If you explain to them that after reading the forum you understand that in order to be the best carer you can you will need a break to avoid burnout - perhaps they could share a weekend. Do as I say not as I do as I haven't tried asking his children but my husband is pretty amenable so I still take him away.

We re off to Italy (with trepidation!) in a couple of weeks on a weeks holiday, we did similar last year and we had a lovely courier and the others in the group were supportive. Because there were some coach trips we could see places but more importantly I got some conversation and met some new people though we spent most of the time independently. We have also been on weekends with Warner hotels where there are nice grounds, usually an indoor pool, excellent staff and entertainment in the evenings not what I would have chosen in the past but it feels like a safe environment. I am going to Italy with trepidation of course but it was just about worth it last year. A week is quite a long time without my breakout room to fall back on but it may be my last trip abroad so we'll see how it goes.

These perhaps would not work for you but thought I'd mention it in case it seems possible. I find that it is as important to have things to look forward to as to actually do them. You sound as though you are preparing well for what lies ahead so I'm sure you'll find a path that suits you and hopefully enables you to have some happiness in this difficult journey.

 

[Mary 85]

Good to hear that you and your husband are independent as I think it will help later on that he is used to being on his own even if just in another room.

I'm sorry you will have to give up your travelling but could you ask your children maybe to stay with him at least overnight so you can have a weekend away somewhere. If you explain to them that after reading the forum you understand that in order to be the best carer you can you will need a break to avoid burnout - perhaps they could share a weekend. Do as I say not as I do as I haven't tried asking his children but my husband is pretty amenable so I still take him away.

We re off to Italy (with trepidation!) in a couple of weeks on a weeks holiday, we did similar last year and we had a lovely courier and the others in the group were supportive. Because there were some coach trips we could see places but more importantly I got some conversation and met some new people though we spent most of the time independently. We have also been on weekends with Warner hotels where there are nice grounds, usually an indoor pool, excellent staff and entertainment in the evenings not what I would have chosen in the past but it feels like a safe environment. I am going to Italy with trepidation of course but it was just about worth it last year. A week is quite a long time without my breakout room to fall back on but it may be my last trip abroad so we'll see how it goes.

These perhaps would not work for you but thought I'd mention it in case it seems possible. I find that it is as important to have things to look forward to as to actually do them. You sound as though you are preparing well for what lies ahead so I'm sure you'll find a path that suits you and hopefully enables you to have some happiness in this difficult journey.

Hello Sue 741215

I am so glad you will be going soon to beautiful Italy! It sounds like you are to travel with a group. Is it an organised trip? You are lucky your husband agrees to travel. The reason I ended up travelling on my own is because my husband doesn't like going away. I managed to take him to a few places but convincing him was hard work. Although once there he pretty much enjoyed it. I had a good time travelling on my own as I had the opportunity to meet and have interesting conversations with people which I wouldn't probably have done if he was with me.

I am now trying to make him agree to a trip to Italy too. I would like to see Sicily maybe in autumn. I am fun of history and there is a lot to see there. But before going anywhere, I want to sort out the legal things that I dislike but it has to be done. His brother who is a little older than him would like to join us. So, maybe that it will help.

I have put Warner Hotels holidays down on my notebook, thanks.

I wish your husband's children could help you a little. I wouldn't ask any help from my own children unless they offer. They probably can't understand old age and are too involved in their own lives and I don't blame them for it. I pray in my agnostic way for me to have good health and keep doing my best.

Lovely talking to you xx

 

[Sue741215]

Thanks Mary for your response - it is good to hear about others. I plan to post about my trip to italy - the good and the bad. It is a Travelsphere holiday where there is a courier for a group. While I can't say I had long conversations with anyone when we went last year I did manage a bit of conversation on the trips out with the group and the trips out also provided some variety. It wasn't perfect but I do feel as if I'm going on a bit of an adventure! This year i have asked for assistance on the plane - not mobility assistance but you apparently go to a separate entry at security and can choose whether to get on the plane first or last.

Our children do help where they can - my two live away so they help by inviting us down for a weekend and my husband's son who lives near helps when I ask - it is good to have him near for practical help and have asked him to invite Bob for dinner so I could go out in the evening once and will do so again occasionally. I am very lucky to have four sisters who we go out with together or they come to us and stay overnight. It is a relief but also very sad when my previously sociable husband still chooses to go to bed at 8pm when we have people staying over. He is such a contented person - I still don't know if he recognises or thinks about his illness - it is a mystery.

I do hope you get to Italy and I think it will be a great help having his brother with you. I take 2 of my grandchildren to a caravan park in August for a few days and one of my sisters and husband comes in her caravan which is a great help both with husband and grandchildren! Have booked this year but will probably be the last time - the grandchildren are getting older and my husband is getting more dependent so we'll see how it goes. I think I just like something to look forward to.

Don't spend too long on the legal things but yes Power of Attorney is a must to do before he loses capacity. It's fairly easy to do yourself - just a pain getting the signatures together if i remember rightly. Let's enjoy ourselves as much as we can and hope it lasts a while yet.

 

[Mary 85]

Hello @Sue741215,

Thanks for writing. Yes, it is helpful to hear from and share with others. It makes you feel you aren't travelling alone to these unknown and therefore scary places that this awful illness can take you.

It is nice your husband's son can help when you ask and you can visit your children for an weekend stay. Having four sister is a blessing too. I wish I had one. My younger brother lives in Greece. He tells me his problems and I try to support him but he never even remembers to ask about how I am coping with life. This is how it has always been. I have recently declined to help which it wasn't easy and made me feel guilty. I won't be able to do that anymore as I now have to think about my own survival.

I hope that my husband's sister and brother will get more involved in our lives but they live in other towns. Their eldest brother and his wife who have no children live in a home and both suffer from dementia. My husband tried to call him but he didn't seem to recognize him although he talked and talked. It wasn't a real conversation as most of what he said didn't make any sense but he seemed pleased with the telephone call.

At the moment I try to support my husband to do his part-time work from home but he finds it increasingly difficult. I very much doubt he will be doing that for much longer. It is sad.

I try to take one day at a time but it is hard and often feel depressed myself.

Have a good day. xx

 

[Sue741215]

Thak you for your reply. I've had a good day thanks as it is my day out when I play golf - Bob goes with a 'friend' out for lunch but is ok to be at home alone until lunchtime. I advertised on Nextdoor website for someone to take him out to lunch intending to pay them and two people offered to do it for free - one didn't last long but one has stayed with us and I have another who I do pay - I also pay for their lunches. I introduced them as someone who was looking for someone to be friends with. Getting out twice a week really makes a difference - I hope you are able to get out.

He also was very reluctant to give up work - we have our own business which his son runs and it was very difficult getting him to retire but he was failing to recognise customers so eventually we persuaded him. His two loves were work and driving and the driving was the worst - I had to drive the car away to the car auction one day as he kept driving it while I was out after he had been told to stop. It was very hard for him but amazingly he got used to me driving and loves to go out in the car. He takes memantine for his Alzheimers and I never know if it is that or his easygoing nature that enables him to be contented.

I hope you can continue with some of your activities and have some good days at least - we all need those breaks to keep going and as you say we must live one day at a time as looking at the future is a bit scary.