Lost and alone.

[Francy]

My husband, JH, I am totally convinced has dementia, he will absolutely not visit a doctor, however there is no doubt this is the problem. His memory is poor with some things, he can no longer read or understand the clock has difficulties with the days of the week, reading, numbers in general and his speech is poor, he can't find the words, these are just some of the symptoms. Mood swings can be bad, he becomes aggressive and angry, won't leave the house and won't let me leave him alone even for a short time. This is not my husband, he was your all singing and all dancing sort of person, not this quiet, withdrawn and angry person who is now in his place.
My despair comes from being at home alone coping with this stranger, for I feel I've lost my lovely husband and I am constantly walking on eggshells. Don't get me wrong I love him dearly, I've just lost him and I'm alone with him and without him, my heart is breaking, I'm trying to reach him and seldom can. Even simple conversation is difficult, he does ask questions and I try to simplify everything I say to make it easy for him to understand. I'm exhausted, I don't sleep well and my own health is suffering , my anxiety levels are through the roof, sometimes I think my heart is going to burst is racing so fast. I have spoken to my doctor, who has given me diazapam to help me through the bad days, I don't want to always rely on these and dependent ,also I'm a bit spaced out on them. I have my sister in law who I can talk to, but she lives in another country and no other family members, it's a lonely and stressful place I'm in. I know this is it, this is my life, I just wish I could cope without the dreadful anxiety. I am not a tearful person but find I'm reduced to tears of frustration and loneliness. JH will put his arms around me and tell me we'll be alright Francy, you and me, and this breaks my heart even more. How do I get my strength back, I need to cope with this better.
Francy

 

[maryjoan]

You will get lots of answers on this. Welcome and you are in the right place!

Firstly, you have to get your husband to the doctor and get a diagnosis. What I did was write to the Dr. and say exactly the sort of thing you have just written here, tell the Dr he must see your husband under some pretext - if he is any good he will make a home visit - ours did.

Once your husband is on the radar, you can access Social Services for a Care Plan for him, a Carers Assessment for you, and all manner of other help. Some of it monetary, some help understanding the challenges of the disease.

Stay on here, post as much as you like - there will always be others who feel just like you do - me for one!!

You need all the help you can get, at a time when you simply do not feel like looking for it, because you are so terribly unhappy. Take note of what other people say on TP - do something - for yourself, today. By getting the ball rolling in respect of your husband, will not make the truth go away, but it will help you.

Please, please do not leave it any longer........

 

[karaokePete]

Hello @Francy, welcome to TP.

I agree that you should get your husband to the GP to check for illness. Things like depression, thyroid problems and vitamin deficiencies etc can mimic dementia but are treatable so it's important to get a diagnosis. Would your husband agree that it's a good idea to check for these things or would your GP collude with you by calling your husband in for something like a well man check up that may include any required checks.

Your husband seems to be concerned for you so would he comply if you made it a favour to you to help you cope?

You may find some ideas in the Society Publications list that you can reach by clicking this link https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

Now that you have found us do keep posting as you will get support here.

 

[Martarita]

Hi Fancy , we're all in the same boat here on Talking Point ,everyone is so understanding and supportive I'm sure you will get some very good advice and help , I too was like you when my OH was diagnosed ,it's so very hard to come to terms with if you ever do come to terms with it .we too don't have much conversation . He also had mood swings the doctor prescribed antidepressants for him which has helped and for this last 3 months I too have been taking antidepressants as I felt so sad and cried a lot ,so please try and get your OH to see a doctor , I really think you should see him too . You're not alone everyone at TP is just a click away ,I'm sorry you feel so low ,hope you get sorted very soon . X

 

[Shedrech]

hello @Francy
a warm welcome from me too
just to give you a link to the main AS site's pages on info for Northern Ireland, some may be useful to yoj
https://www.alzheimers.org.uk/search?keywords=northern+ireland&Search=

 

[Grahamstown]

I was very touched by your post @Francy and I too am glad you found Talking Point. It is such a support when there is nobody else who could understand. To put your thoughts down and connect with other people in similar situations does help to get through the bad moments. I do hope you manage to get your husband to see a doctor and others have suggested ideas. The only thing I can say is that having the medical profession behind you, if they are any good, does help your well being rather than feeling you are struggling quite alone. My thoughts are with you.

 

[Francy]

I was very touched by your post @Francy and I too am glad you found Talking Point. It is such a support when there is nobody else who could understand. To put your thoughts down and connect with other people in similar situations does help to get through the bad moments. I do hope you manage to get your husband to see a doctor and others have suggested ideas. The only thing I can say is that having the medical profession behind you, if they are any good, does help your well being rather than feeling you are struggling quite alone. My thoughts are with you.

Thank you.

 

[Francy]

I was very touched by your post @Francy and I too am glad you found Talking Point. It is such a support when there is nobody else who could understand. To put your thoughts down and connect with other people in similar situations does help to get through the bad moments. I do hope you manage to get your husband to see a doctor and others have suggested ideas. The only thing I can say is that having the medical profession behind you, if they are any good, does help your well being rather than feeling you are struggling quite alone. My thoughts are with you.

Thank you.

 

[Grahamstown]

Thank you.

I don’t know how ill your partner is, but when I told my husband that it would be a good idea to have a check up with the doctor, he said he was perfectly fine and wouldn’t go. So I said I would talk to the doctor when I went for my blood tests today. Needless to say he forgot I was going but the doctor spoke to me and booked him for a double appointment for next week. When I got home I said that I had done this, he had completely forgotten our previous conversation and he didn’t say much about the appointment so that is that. I shall take him to see what is going on with his various symptoms. They could be down to side effects of the dementia, side effects of donepezil, something physically wrong, so I feel relieved that I have acted, it’s in his best interests anyway. I do hope that you can get your partner to get some help. Carers need support if they are going to carry on. I can tell you that you are not alone in all those feelings you describe, it’s soul destroying. Keep getting support here if nothing else.

 

[Francy]

JH is slipping deeper in to confusion and it's really troubling him, I know he's afraid, I can see it. I try really hard to make things easy and simple for him and it's nice as he knows it. Yesterday was tough and he was having a problem, very agitated. I needed the help of a friend to do a message , I explained why I needed her help and she called in, well she gave it to JH plain and straight about seeing the doctor asap, he just sat there and took it and agreed he would go. I should add this friend we've known since she was a little girl and now is a mature woman working in the hospital and used to dealing with difficult patients. My doctor is on holiday, bad timing, till Monday, but I will ring first thing and I know he'll see JH asap as I have spoken to him previously about my situation, so a breakthrough at last, I only hope he doesn't go back on his word as he has done in the past, but if he does I'll bring in reinforcements. I have also enlisted the help of another friend who will guide me through Enduring Power of Attorney. There was help close by, I only had to ask, but I hate being a bother and have always managed on my own in the past, this was just too big for me.
Wish us luck on this long hard journey.

 

[Izzy]

I'm so glad that this seems to be a turning point and that you've reached out for help.

I hope the apointment goes well when it comes. Please let us know how you get on.

 

[Scraggy mag]

I'm so glad that this seems to be a turning point and that you've reached out for help.

I hope the apointment goes well when it comes. Please let us know how you get on.

Oh my I can relate to everything you say we have just started .been to the doctors and my oh failed all the tests got a appointment for MRI scan and been accepted to memory clinic it was heartbreaking he cried that day so did I my lovely hubby big and strong reduced to this . But two weeks on we are doing ok I said we will enjoy each day and not be moping about but then he can't turn the Tele over or can't say what he wants to say and I struggle but I'm determined to try and make the best of christmas.i don't know what's in store tomorrow. I really feel for you thank god there is this site I don't post much but look all the time it helps to know we are not alone and people have good advice .take care x

 

[Grahamstown]

I can relate to your post so much @Scraggy mag as I endured similar difficult days earlier this year. We are much more stable now as I have got used to the severe memory loss and can manage our lives better than before when I used to get so upset. I feel that it’s me who has changed to deal with this dreadful disease, because he has no control over it and relies on me. So if you can endure these dark early days then there is a slightly better place in the short term. I never look more than a week ahead although I make a few plans that may or may not be carried out. Thinking of you xx

 

[Scraggy mag]

I can relate to your post so much @Scraggy mag as I endured similar difficult days earlier this year. We are much more stable now as I have got used to the severe memory loss and can manage our lives better than before when I used to get so upset. I feel that it’s me who has changed to deal with this dreadful disease, because he has no control over it and relies on me. So if you can endure these dark early days then there is a slightly better place in the short term. I never look more than a week ahead although I make a few plans that may or may not be carried out. Thinking of you xx

Thank you I am doing better than them first couple of days what scares me is how long before it gets to the next level .he can still understand things and we can function his memory is bad but he has moments when I think he's not that bad then he does something really silly . I try to take a day at a time but that feeling when is he not going to recognise me and gets worse really scares me .when I read posts on here people have been dealing with it for years I hope he can stay at this stage a while and not get worse . I suppose there are no time schedule . Thank you for your reply and you take care x

 

[Grahamstown]

Thank you I am doing better than them first couple of days what scares me is how long before it gets to the next level .he can still understand things and we can function his memory is bad but he has moments when I think he's not that bad then he does something really silly . I try to take a day at a time but that feeling when is he not going to recognise me and gets worse really scares me .when I read posts on here people have been dealing with it for years I hope he can stay at this stage a while and not get worse . I suppose there are no time schedule . Thank you for your reply and you take care x

I agree that reading other people’s experience is very scary but given time you may be able to put it to the back of your mind. Please don’t think ahead too far and imagine those things because it may not happen. My husband has gone downhill so much over the year since he was diagnosed and I felt like you. He has stabilised at a lower level and is happy but I still see small changes after a few weeks. By the sound of it your husband is much the same, needs constant care to keep him safe but not so bad that I need carers in. I can cope at the moment but am resigned to his inability to remember anything for more than a few seconds, so disabling. I can leave him at home for a short while but always have to be back. I know that may change but I try not to worry about it. I can’t say enough that it’s me who has had to adapt because he can’t change. With fond thoughts to keep you going x

 

[Francy]

Thanks Izzy, I just wasn't coping any longer, it was difficult for me to admit to this, it may have been easier if I had family, but we are alone. JH doesn't want to go to doctor until after Christmas ,so I will wait a little longer. TP has been a great help to me, I am understanding more now.
XXXX Francy

I'm so glad that this seems to be a turning point and that you've reached out for help.

I hope the apointment goes well when it comes. Please let us know how you get on.

 

[Francy]

Oh my I can relate to everything you say we have just started .been to the doctors and my oh failed all the tests got a appointment for MRI scan and been accepted to memory clinic it was heartbreaking he cried that day so did I my lovely hubby big and strong reduced to this . But two weeks on we are doing ok I said we will enjoy each day and not be moping about but then he can't turn the Tele over or can't say what he wants to say and I struggle but I'm determined to try and make the best of christmas.i don't know what's in store tomorrow. I really feel for you thank god there is this site I don't post much but look all the time it helps to know we are not alone and people have good advice .take care x

Hello Mags, I too have decided to make the most of Christmas as I think this may be the last JH remembers. You mentioned your husband can't switch channels on tv, my husband has similar problem, I often find him looking at sales channels in total confusion and since he's lost all concept of time he misses programmes he may have liked, but has difficultly following them anyway, his life was TV, he worked in BBC and film industry, so it's his passion.
I find TP has been a great help understanding the effects of this horrible disease.
Mags I hope you can have a good Christmas, may it be peaceful and happy.
XXXX Francy