don't know what to do

[Barney18]

My hubby now 1 year into his diagnosis. I still work full time and we don't get any help. We have been doing our house up since we moved 18 months ago and have had many rows, mishaps and tears. He had another scan and checkup in September but despite being on Aricept he has deteriorated. He falls asleep a lot of an evening I don't know about during the day as I'm not here. There have been several incidents over the last couple of weeks where he has told me that the electrics all went off ( a fuse tripped but he didn't understand ) I called out an electrician who thought he had put a kettle on to boil with no water. The shower went off but he turned all the lights off. We belong to a gym but he fell off the treadmill and because his speech is slurred they wanted to call an ambulance as they didn't know about his alzheimers. He won't let me say anything or tell anyone and things are getting worse. He shouts a lot when things go wrong and nothing is ever his fault. This week I went gym he tried to follow me, but I'd already driven off. He'd locked himself out of the house and walked round to the gym and waited by the car in the rain until I came out. I think I should go and tell my doctor but know that my hubby will not come or want/accept any help. I feel as if I'm losing the plot already and can't imagine how it will be when things get really bad

[Jo1958]

Barney, hi
It sounds as if things have moved a bit and need to get an assessment from Social Services for both your husband and yourself, it will open the door to any help and support available to you both and could help your husband to concentrate on what he can still do rather than emphasising what he cannot. Have you been in touch with your local Alzheimer's Society as they are a wonderful contact who can help you both with making the best of your situation.

Working full time and renovating your house while living in it is enough for anyone but this dementia in the mix it sounds like time to look for help, it should mean that you can relax a bit and hopefully things will look brighter for you both.

I look forward to hearing how you get on, with best wishes from Jo

[FifiMo]

Barney,

Very often you find that the person with dementia is either not aware of the fact they have the disease or are in avoidance due to fear etc. In the absence of getting him to visit the Dr, I would recommend that you start compiling the "evidence" that will give the Dr the insight into what is going on; how bad it is; and if it is getting worse. To do this you need to start compiling a diary and make notes of all the incidents that happen, when they happen and any other information the Dr might need to know, eg that not only did he follow you to the gym but stood outside unaware that it was raining. The diary will let the Dr built up a picture as to what is happening and will also let him assess the risk factors too, like can he reasonably be left on his own for any period of time, that kind of thing. You can make an appointment with the Dr and show him the diary, or, failing that, sent him the details from the dairy in advance of any appointments which you might finally get with your husband with you. Doing it this way helps to avoid discussions about events and dementia in front of the person, especially if they are agitated by being at a Drs.

Fiona

[Onlyme]

Hi Barney

Remember to note that he has slurred speech as this kind of information is important.

I send a list of strange things that have happened to the specialist before we go and then I don't have to discuss the problems in front of Mum.

[Barney18]

Thanks for the advice everyone. The diary sounds like a good idea as I have thought of making an appointment before when something happens but then when a couple of days have gone by with no incidents I convince myself that everythings ok. Will he get an assessment if he doesn't want one? because when he was first diagnosed they sent someone from mental health to do an assessment and he told them he didn't want it so they wrote and said his case was closed! I wasn't even here and thought that was a bit daft as how would he know if he needed it or not?

[BeckyJan]

I wasn't even here and thought that was a bit daft as how would he know if he needed it or not?

Why not write to the Mental Health Consultant and say just that - perhaps enclosing a copy of the diary/log of behavioural problems? Could you say you will be available at the next appointment?

[Barney18]

He won't want them to come round. He thinks he's ok but obviously he's not. He refuses to discuss illness or come doctors with me. I am going to tell my doctor what's been happening but if my hubby is adamant he's ok I don't know what will happen then. Does anyone else have this problem? If I try and bring it up he just starts shouting again. He said he would take me to court if I tried to get social services involved

[jan.s]

Hi Barney
Sorry to hear you're in such a predicament. I think the diary is a great idea, and then talk to gp about your options.
THinking of you. Jan x

[Saffie]

I'm sure you should be able to discuss this with your husband's GP without him being there. I was able to with my husband's. The GP isn't breaking any code as you are the one saying what is happening, not him. He might be able to suggest a way of your husband agreeing to attend an appointment. My husband's first appointment about his 'memory problem, was to see if he was lacking Vitamin B12 as this can cause cognitive problems. It was genuine but a blood test showed his level was fine and it opened up the dialogue. best of luck X

[Reds]

Feel for you, my husband has Alzheimer's and my house has got building work going on and is half finished! Its just too much to deal with in one go! We so need everything to be settled so we can just deal with what is going to come with Alzheimer's.

Take care of yourself too! x

[Barney18]

Hi Reds, I to felt like I needed to get house done so I could concentrate on the illness. I used to get loads of phone calls from the builder as I'd say one thing and then hubby would try and change it. At one point I was so stressed I had a row with the builder who threatened to take his tools and leave. He must have thought I was bonkers and hubby very odd as of course he didn't know about the alzheimers. Just keep saying to yourself 'this to will pass' I find that works for most things as does wine ha ha !

Saffie, I'm going to the dr on thursday as need to talk to him about things. Hubby's hand now doing strange things and I think it's time we got some advice.

Thanks to everyone it's so great being able to come on here and say exactly what's on my mind. Who needs counselling eh?

xxx

[Grannie G]

and walked round to the gym and waited by the car in the rain until I came out.

This brought tears to my eyes.
I remembered going out one day and getting caught in a downpour. As I was hurrying home, my husband was coming to meet me, carrying an umbrella. But he had been in such a panic he had forgotten to put his coat on.

Please persevere without your husband`s knowledge. It is what I did and the consultant accepted my observations. You need to talk to the consultant as well as your own GP. Mental Health may have closed your husband`s file but the consultant should not. Your husband has a progressive illness.

[Eema]

Hi, I'm 46 and have vascular dementia. I have more awareness of my limitations, that's one of the differences between that and Alzheimer's. As a patient and a lawyer, I'm very sensitive about autonomy and all that. But you have to get social services involved. If he threatens you with a lawyer, tell him to go right ahead. He'll probably drop it anyway or will very quickly. As for others you can make that call as to who has to know and when. As I tell my kids, 'I'm controlling my behavior, not yours, this is what I need to do and you can be unhappy with me, that's yours.' Or as I used to tell them when they were a bit younger, 'I have to keep you safe, and if you want to get upset with me while I'm doing that, that's fine, I can take that. But I'm still going to keep you safe.'

Now as rational as I sound, I do a lot more shouting than I used to. I have less inhibition than I used to, and the world also becomes a lot scarier. Just keep that in mind when he's driving you bonkers. Distract him etc when possible, have conversations away from him when possible, realize that he will get upset with all of that - and try to love all the parts of him that are still there and still lovable just the same. Think of him as a scared child in this way, while relating to him as an adult. Does that make sense?

I really wanted to commiserate on the renovations. It is unbelievably difficult even without a husband who gums up the works. I also should do some work on my house now while I still can, some of it has been out off and I have a space to put in a downstairs shower. (I have physical limitations apart from the dementia.) anyway once all that's done it WILL make things easier. Take lots of deep breaths and imagine how nice it will be when it's all done.

[Barney18]

Hello Eema, thank you for being so honest with your response. I won't say that I'm sorry your here at your age as I'm sure you think that anyway and there is no right or wrong age. Our son got terminal cancer at 22 so I've given up wondering why things happen, they just do. It's how we deal with things that count. I very much take each day as it happens and hope you do to. You don't say how old your children are or if you're still working? I'm putting the house on hold til after Christmas as I have a few things to keep me going. Hubby is starting neuro physio as he too is getting physical limitations, mainly right side not working properly and speech therapy as his speech is slurred. He hasn't said about taking me to court recently as I think he realises he needs help. I also have to get POA in place ASAP as he can't sign his name because of right side and he doesn't realise what a POA is. He thinks it's some kind of will and why don't I need one? I will work on that one. My daughter (27) accused me last week of rushing things and that I'm wasting my time with 'dad' and should be enjoying we have the time left together. I said to her I want to get all the practicalities out the way so that we can enjoy herself. Wishing you and anyone else in need of help/hope all the best and a Happy Christmas xxx

[gardengirl]

Barney 18, I think you're doing well! The POA is important and have organised one for my husband/one for me in order to ensure everything is in place and all finances can be dealt with a lot easier by you. Once this is in place you can then have the time together your daughter feels you should be having.