New and puzzled

[Mary 85]

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.

It is good to hear from you @Sue741215 and I am glad you enjoyed your golf playing day.
Thanks for mentioning the Nextdoor website. It could be helpful to me too. Is it an app you downloaded? How can one join it? It sounds like you trust it.

May I ask if your husband is in the first or middle stage? It must have been a few years since you joined this great forum and your husband sounds like he is still not doing too badly. I mean his going out and having lunch with a new person is something.

I haven't heard of Memantine but found out that slows the progression of moderate to severe Alzheimer's. My husband is on Donepezil. Fortunately this medication exists although it isn't sadly healing the patients.

My husband's big love has also been his work and his car (it is probably never talked about being our car!). I rarely drove if we were to go out anywhere but now he is all right with me driving. I believe he wants me to become independent. I say that because after I had a car crash, I had found it difficult going back to driving especially I have a fear of motorways. I am thinking of getting some driving lessons that will help with it. We haven't heard from DVLA yet about his driving the car. My husband has an easy going nature too and I hope for it to last as long as possible.

I am very busy supporting my daughter on daily basis who studies in a French speaking uni. I used to be a French teacher but she expects miracles from me! My brain isn't what it used to be either. There is a lot to do in the house and let's not talk about the garden. I used to like going to courses (history, art, languages) and visit museums/galleries but I can't do it anymore. I gave the French group I used to run in our area. There is always something on the way.

Yes, looking at the future is a bit scary.

Lovely talking to you and thank you.
Have a good end of the week.

 

[Mary 85]

Hi all,

I don't know how to start a new thread.

My husband has a drink of Souvenaid every morning.
We followed the advice of the consultant.
Do you buy it? What is your experience with it?
Would having two a day instead of one could make a difference?

Thanks and best wishes.

 

[Sue741215]

Hi again @Mary 85 - I think I would say my husband is in early middle stage mainly due to his lack of empathy, inability to listen (think this is due to him not able to switch from his own immediate thoughts and his being unable to do things that he does not do regularly. He can still do most things that he has usually done eg cut the lawns - make his own lunch (though I just stopped him eating some mouldy bread recently).

One thing that seems to be different with your husband is that seems aware of his condition and is able to talk about it - mine does not acknowledge his condition though I feel he must be aware of his dependence on me - he has got in the habit of asking me what time he should get up and what are we doing today.

He was diagnosed with 'Alzheimers like changes in his brain, following a scan for an eye tumour in 2019 though I had noticed changes before that so was shocked but not surprised. I think you are right that he has deteriorated slowly though I think he has got worse lately - hopefully your husband will decline slowly too - I think he sounds at the level my husband was a couple of years ago. It is difficult to tell as the changes are so slow and he can seem worse then get better again. Everyone is different anyway. We were told the only drug he can take of the options available is Memantine due to his heart problems. He had a stent fitted due to having angina but doesn't seem to have a problem now. He can walk miles though it is hard to get him to.

I hope this information is helpful to you.

 

[Mary 85]

Hi @Sue741215,

Sorry for the late reply. I feel pretty low at the moment. Hopefully it will pass. My husband is busy with work till the beginning of July and we left everything we want to do for when he's finished but I think and think about many things which is stressing. There are so many issues. For instance, we haven't told our daughter who is at uni because she had to take her exams, we have to renovate the kitchen and maybe build a shower downstairs etc. At the same time he experiences some 'small' difficulties while doing his work. I had to take the phone from him and talk to the bank myself as he wasn't making the point we wanted to make. I used to leave all the talking to him but now I feel he takes ages to come to the point. Maybe I am wrong.

Yes, as everybody says, each case is different. I am not that surprised at your husband's eating mouldy bread. My husband has always seemed to enjoy eating old or past its date food! I don't know why he does it.

Nice talking to you.

 

[Sue741215]

I don't think you are wrong @Mary 85 - it is so sad to see them losing their thread. It's hard to know when to take over and when to let things go. When I feel down I tell myself that everyone has down times and it passes. Although we have much more reason to feel down I still think there is a bit of truth there - your mood will lift and things that seem insurmountable today will be do-able (just)tomorrow.

The worst thing my husband does (and it is very trivial) is telling a joke to people - unfortunately the joke has a rude word in it. It has caused him to be 'banned 'from 2 pubs. I worked hard to get him to stop and he doesn't do it when I'm there but loves to escape so he can. I used to get so stressed about it - he did stop for a while but has started going into 2 local pubs - one he is supposedly banned from. I follow him on Find my phone and used to chase after him but I now leave him to it - I realised I was just getting very stressed and he wasn't really harming anyone or himself so I'm afraid the pubs will have to deal with it if they don't want him in there. The reason I'm telling this story is to say don't worry too much about getting things right - we can only do our best and if something is too hard - think whether it is really harmful and if not leave it.

It is good that you are still deciding things with your husband - we are different in that we ignore his illness - I used to try and talk to him but he did not want to engage so I just get on with things myself - easier in some ways but harder in others.

Hopefully your daughter's exams will soon be over and you can tell her - I would be surprised if she is not already aware to some extent and I suspect telling her will not be as bad as worrying about telling her. Try not to agonise over things - just think about what you can do. I don't know if you ever read 'Gone with the Wind) but the main character Scarlett O'Hara, when she had a too hard problem used to say - I'll think about that tomorrow. I find it useful to think I'll do a Scarlett when I find myself dwelling on a probably unsolveable problem. Silly as it might seem it works for me so might be worth a try.

Tomorrow is another day - try to make the best of it - it is all we can do. Hope it is a better day for you.

 

[Allbut]

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

AND Blue badge

 

[Aries54]

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

Hi Mary85
I’m in the same boat. My husband was diagnosed about a year ago.
I’ve done all the legal stuff and am trying to carry on as normal but I too worry about the future. He has had his licence renewed and can drive for a year, although, like you, I have to give directions ….so I just ask him if he wants to drive and nine times out of ten he says no so I’m driving more which I think is better for both of us.
We felt so alone but I managed to persuade him to go to some Alzheimer’s groups nearby. Now he loves going and I too am quite happy to chat to others who are in the same boat, and similar situations. Friends ask if you are doing okay but they don’t understand like the groups do.
It’s hard to take it all in at first but we have decided to take everyday as it comes and make happy memories….. and enjoy what we can do now.
Keep strong xx

 

[cammyuk]

@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.

I hope you dont mind me asking [ I am not being nosey}but does your friend have to pay for her care or is it continuing health care funded?
My sister is in a nursing home and they wont let her go home[ council property] without 24 hour care which they say NHS wont pay for, I have been told she has full nursing care funded ,but also have read that if she is that bad why not NHS funding be put in place so she can go home? Thanks x

 

[Msolo]

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.

I applied for Attendence Allowance for my husband he was not involved in filling out the form as it was done in my name

 

[Violet Jane]

@cammyuk, my friend is completely self-funding her 24 hour care at home. It is cheaper for the state (the NHS or the LA) to pay for care in a care home than 24 hour care at home because the state negotiates lower rates for care homes than those that self-funders pay.

 

[Jude48]

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.

We did POA s together with a group of friends making a bit of a laugh about it

 

[Mary 85]

AND Blue badge

Hi Mary85
I’m in the same boat. My husband was diagnosed about a year ago.
I’ve done all the legal stuff and am trying to carry on as normal but I too worry about the future. He has had his licence renewed and can drive for a year, although, like you, I have to give directions ….so I just ask him if he wants to drive and nine times out of ten he says no so I’m driving more which I think is better for both of us.
We felt so alone but I managed to persuade him to go to some Alzheimer’s groups nearby. Now he loves going and I too am quite happy to chat to others who are in the same boat, and similar situations. Friends ask if you are doing okay but they don’t understand like the groups do.
It’s hard to take it all in at first but we have decided to take everyday as it comes and make happy memories….. and enjoy what we can do now.
Keep strong xx

Thanks @Aries54. It isn't possible not to worry about the unknown future but as you say, the only thing we can do is take everyday as it comes. It is good that your husband will be driving for another year and hopefully for even longer. After my car accident I became fearful and now I want to overcome this fear by driving more often myself but my husband loves driving too much to let me practise. The A's groups around here seem to be for people in more advanced stages so, it is too early to start going there, I think and he thinks so too.
Yes, it is great sharing and getting so much support and understanding in this group. I avoid talking about how I feel even to my children. They have busy lives and it isn't fair bothering them with my anxieties. I find it surprising that we haven't heard from the GP or the memory clinic after the diagnosis and the prescription of medication. It is like we are left on our own and whatever will be, will be. Fortunately I get a lot of information from the Alzheimer's organisation and I am really grateful. Keep well and take good care of yourself xx

 

[Sorrel]

Hello everyone. I have been a member for a while and read these threads from time to time, but today I really feel I would like to say thankyou for all these comments - this conversation has probably been the most useful thing I have read so far about an Alzheimer's diagnosis and what to expect. I feel so much of it is relevant to us (me and my lovely husband). He is so accepting of his diagnosis (usually, although he has his sad moments occasionally) that he is really making it easier for both of us. However today he has had to give up his car - driving and cars have been such a big part of his life - and I know that this is another turning point for us. At the moment I can't add anything - I feel that I agree with everything that has been said and my next step will be to try to find a trusted companion for him for the couple of days when I would like to continue to carry on my own activities for as long as I can, and he agrees with this, but maybe not so much the companion part (yet!)! So thankyou again, and I will keep reading.

 

[Mary 85]

Hello everyone. I have been a member for a while and read these threads from time to time, but today I really feel I would like to say thankyou for all these comments - this conversation has probably been the most useful thing I have read so far about an Alzheimer's diagnosis and what to expect. I feel so much of it is relevant to us (me and my lovely husband). He is so accepting of his diagnosis (usually, although he has his sad moments occasionally) that he is really making it easier for both of us. However today he has had to give up his car - driving and cars have been such a big part of his life - and I know that this is another turning point for us. At the moment I can't add anything - I feel that I agree with everything that has been said and my next step will be to try to find a trusted companion for him for the couple of days when I would like to continue to carry on my own activities for as long as I can, and he agrees with this, but maybe not so much the companion part (yet!)! So thankyou again, and I will keep reading.

Hello @Sorrel, I am sorry to hear that your husband had to give up his car he loved. My husband will soon.

My husband has always been kind, considerate, caring for his family and other people. It doesn't feel right for him to have such an ending. But by now, at the age we all are, we know that there isn't any fairness in life.
Sorry, but I am struggling to accept what is happening to us.

We have to find various way to help us cope with all the losses that will keep coming one after the other. And we have to accept what we can't change. All that it is easily said but we as long as we live we keep hoping.

 

[liz4]

Hello all, I’m also new and really relate to the above, though my husband is further advanced with early onset Alzheimer’s.
I agree so strongly about getting support sooner rather than later. I’ve had an uphill struggle with this, as my husband was quite resistant to ‘outsiders’.
I gradually gave up my activities to be at home, which as I’m a sociable person, took its toll on me. Things are better now, (with some regular paid-for care), but I realise that I should have accepted earlier offers from neighbours and friends to come in on a regular basis, instead of trying to be the sole source of support and entertainment!
I think perhaps it’s easy to just imagine we’ll cope, but it’s a long haul, and we need to be compassionate to ourselves as carers! Thanks for the thoughtful posts.

 

[Mary 85]

Hello all, I’m also new and really relate to the above, though my husband is further advanced with early onset Alzheimer’s.
I agree so strongly about getting support sooner rather than later. I’ve had an uphill struggle with this, as my husband was quite resistant to ‘outsiders’.
I gradually gave up my activities to be at home, which as I’m a sociable person, took its toll on me. Things are better now, (with some regular paid-for care), but I realise that I should have accepted earlier offers from neighbours and friends to come in on a regular basis, instead of trying to be the sole source of support and entertainment!
I think perhaps it’s easy to just imagine we’ll cope, but it’s a long haul, and we need to be compassionate to ourselves as carers! Thanks for the thoughtful posts.

Hi @liz4 and welcome to the forum,
I am glad things are better for you now. I suppose we make adjustments as we go along and find out what works for our OH but also ourselves. I try to keep more in touch with my husband's sister and brother as he is happy to see them. Also they can be a support later on especially when it will come to taking him out or on holidays. My OH doesn't want to let other people know but we might have to later on.
I am not very outgoing but like going to a few places like courses, museums, exhibitions or little trips. So, I hope that I will be able to do a few of those things. At this stage I believe that I will be all right doing it on my own for some time but who knows how soon our situation can change.
Was it easy to get paid-for care support from the local authority?

 

[liz4]

Thanks @Mary 85 - yes it’s a gradual adjustment and I’ve found family and friends to be incredibly supportive, especially once you share the diagnosis.
Also worth asking your local Admiral nurse service for advice. Best wishes.

 

[Mary 85]

Thanks @Mary 85 - yes it’s a gradual adjustment and I’ve found family and friends to be incredibly supportive, especially once you share the diagnosis.
Also worth asking your local Admiral nurse service for advice. Best wishes.

Thanks @liz4. It will come a time when we will have some friends and acquaintances know. It doesn't feel comfortable to do it now. I am just wondering about our neighbours. Should we and if so how and when to say something about it.
Yes, I heard about Admiral Nurses.
Best wishes to you too.

 

[jennifer1967]

can i say that as soon as my husband had a diagnosis, i told the children[adult] and his sister. as it was lockdown and he was sheilding{COPD} we told the neighbours as and when we saw them. he wasnt allowed out of the front garden so if anyone saw him they could direct him back. since then, the neighbours look out for him and check hes ok as he passes them. they will even offer lifts to him if they see him walking along.
ive never seen the point of keeping it a secret. its not shameful or bad and the stigma will remain if its kept behind closed doors and never spoken about. you couldnt hide a broken leg so why hide dementia

 

[canary]

It will come a time when we will have some friends and acquaintances know. It doesn't feel comfortable to do it now. I am just wondering about our neighbours. Should we and if so how and when to say something about it.

My experience with mum is that by the time she got a diagnosis and I then told friends and neighbours, they had already guessed that this was the case....