Feeling so alone

[Margaret59]

At Drs today with OH. Have now been referred to see a specialist and in the meantime prescribed Certalopram to help with his anxiety.
OH on the defence and telling GP he is much better. Luckily she asked me what my opinion was. Firstly I reminded my OH that I was not trying to make things look bleak but that the GP had to know about recent events so that she could help him. Thankfully he seemed to accept this.

Had a really good start to the day apart from finding the can opener in my make up drawer and the dish towel in the bathroom. OH had also tried to hoover up some crumbs with the steam mop. But --- he was more upbeat, not as emotional and no aggression.

After dinner tonight it was back to the usual questions -
Who are you? Do they pay you for looking after me? If you wore a uniform and a badge like carers/nurses do it would say your name and then I might remember it.
Will you be staying tonight? Who else is staying in this place?
I ended up in tears after he had gone to bed. Tired and frustrated !!!

Recited the Serenity prayer to myself -----
God grant me the serenity to accept the things I cannot change
The courage to change the things I can
And the wisdom to know the difference.

Well I will have to accept the things I can't change and I am wise enough to know the difference.
What I can change?? I'm not sure.

Oops need to go. OH is on the move, I can here doors been opened and closed upstairs.

Love to all xx

 

[Izzy]

Sorry you're having such a bad time.

Would it help in future if you handed in a note of your observations/concerns/thoughts to the GP a day or so before an appointment so that you don't have to talk about them in front of your husband?

 

[Grannie G]

Sorry you're having such a bad time.

Would it help in future if you handed in a note of your observations/concerns/thoughts to the GP a day or so before an appointment so that you don't have to talk about them in front of your husband?

I second this suggestion. I always sent a letter to my husband`s doctor prior to an appointment, usually a behavioural report and other observations.

 

[Trisha4]

Hi Margaret. Like others I recognise many of the things you describe. My husband was diagnosed with Alzheimer's 3 years ago although there were problems before that. What surprises me is the speed with which the situation has escalated. It must be so very hard for you. I hope you get some clear medical diagnosis soon so that at least you know what you're dealing with although none of us carers know what the next stage with our own loved ones will be. Dementia seems to move in different ways with different people. You can always be sure of understanding, empathy and support on here.


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[Margaret59]

Thank you for all of your replies. Once again it has been a great support.
I have not left my other half on his own so am now with him 24/7.
I have no doubt that there are many people in the same situation.
At the minute I feel I am coping well but it is only early days. When I get frustrated I try to walk away for 5 mins, into another room or out into the garden.
If I need shopping I have to take him along too. If he is having a bad day and doesn't want to go out then we stay at home.

How do you manage in this situation?
Can anyone please give me any tips, ideas, advice with me been new to this xx

 

[Grannie G]

Hello Margaret59

How do you manage in this situation?
Can anyone please give me any tips, ideas, advice with me been new to this xx

I was allowed Direct Payments and had a carer in for a couple of hours each day. This enabled me to have a break from caring even if it was to do some food shopping.

24/7 without a break is too much. Contact SS and see what`s on offer.

 

[oilovlam]

Thank you for all of your replies. Once again it has been a great support.
I have not left my other half on his own so am now with him 24/7.
I have no doubt that there are many people in the same situation.
At the minute I feel I am coping well but it is only early days. When I get frustrated I try to walk away for 5 mins, into another room or out into the garden.
If I need shopping I have to take him along too. If he is having a bad day and doesn't want to go out then we stay at home.

How do you manage in this situation?
Can anyone please give me any tips, ideas, advice with me been new to this xx

Margaret, I don't know what advice to give but you will need someone (or several trusted people) who you can talk to, who will listen and hopefully find you ways to cope and to make the decisions that will help. Hopefully the 'Old People's Mental Health' team will assign you someone who can be one of your 'go to' people.

The rapid progression of symptoms is something that most people here probably won't have much experience of....personally things have changed fairly slowly and I have had time to adjust. Because things change so rapidly you will probably need extra help & advice. You will need to find ways to look after yourself and may have to make some tough decisions to 'protect' yourself mentally as well as physically.

 

[HillyBilly]

Thank you for all of your replies. Once again it has been a great support.
I have not left my other half on his own so am now with him 24/7.
I have no doubt that there are many people in the same situation.
At the minute I feel I am coping well but it is only early days. When I get frustrated I try to walk away for 5 mins, into another room or out into the garden.
If I need shopping I have to take him along too. If he is having a bad day and doesn't want to go out then we stay at home.

How do you manage in this situation?
Can anyone please give me any tips, ideas, advice with me been new to this xx

You need time to yourself, easier said than done, but absolutely vital. There are day care facilities, befriending services, homecare services. The sooner you can get something in place the better so that it becomes the norm, a routine. Contact the Alzheimer's Society, Age UK etc, have a look for carers' support networks in your area. Making contact with others in a similar situation can provide you with support and valuable local info xxx

 

[Margaret59]

Thanks everyone. I will see what Social Services can come up with although I doubt if I will get much help until we get an official diagnosis.
My OH would definitely not like a stranger coming into the house. I do have a few close friends but they have commitments with work and children.
Yes would be nice to even get out to the shops by myself. Perhaps even get to the hairdresser's for a much needed hair cut. Might make me feel a bit Cherokee!!
Am feeling a bit downbeat today.
My OH just sat staring at me for hours on end last night and wouldn't go up to bed until I said I would go too. As previously said my "me time" is usually once he has settled although he can be up and down constantly during the night.
Love and hugs to all of you. I will give myself a shake and get on with my day xxxx

 

[Margaret59]

Sorry that should have said CHERPIER not Cherokee. Stupid word prediction was on and I hadn't checked before I submitted xxxx

 

[Grannie G]

Margaret, the `stranger` came into our house on the pretext of helping me with the cleaning. My husband was perfectly happy to allow this. The carers kept out of his way and actually did some light cleaning which made life much easier for me.

I went out while they were here, telling my husband I was embarrassed sitting around while others cleaned the house for me. I asked him to keep an eye on them while i was out and he was most willing to do so.

He even lifted a rug so they could vac underneath it.

 

[Margaret59]

Hi Grannie G,
Thank you for your advice.
I will look into the possibility of employing a cleaner
Today has been a good day. Apart from the usual, how many people live here?, who are you?, are you staying for a while ?!! OH has been quite calm, thankfully.
It's been a beautiful, very warm day and we managed to sit in the garden and watch the birds coming and going for food and splashing in the bird bath.
Love and hugs x

 

[Margaret59]

Sorry you're having such a bad time.

Would it help in future if you handed in a note of your observations/concerns/thoughts to the GP a day or so before an appointment so that you don't have to talk about them in front of your husband?

Hi Izzy,
Thank you for your suggestion.
I have been keeping a diary so would have loads to tell the GP or specialist. X

 

[Leymoorlord]

You are NOT alone

Hello Margaret,
Just wanted to reinforce, really, what others are saying. My lady of 21 years has, over
the past 18 months, exhibited many similar symptoms, the first of which, for me, was when I found my varnish brush in her underwear drawer... There are many of us here, we all can confirm that yours is far from a unique situation.
For D, it's the tablets, although she has been taking some medication for more than two
years, ALL tablets are now very suspicious, are likely to cause problems, (and I don't need the damned things anyway) have been issued by bits of lasses, who don't really know what they are about.
Food? No appetite, no taste in anything, all tastes like eating cardboard, lost almost 10 kgs in nine weeks, stomach pains, headache constantly, etc. etc.
I learned one thing when her new Admiral Nurse called last week; such patients are more deeply influenced by facial exression than what is actually coming out of our mouths, and 'Stop shouting!' when I am not shouting - apparently another commion sympton.
Continually threatening to 'leave and go home' if something said does not please, has only been here a week (actually 15 years in this dwelling) and came by bus, to find me standing at the door to meet her, although I am definitely NOT the same person she lived with previously. I went out to an evening soccer match last week, got home around 10pm, she met me at the door with, 'Oh, it's you, you decided to come here, I tjought you'd have gone straight home', and then showed me around the place like a complete stranger, pointing out the improvements she had made.
As you read around the posts, I just hope you will find things that help..

 

[Margaret59]

Hello Margaret,
Just wanted to reinforce, really, what others are saying. My lady of 21 years has, over
the past 18 months, exhibited many similar symptoms, the first of which, for me, was when I found my varnish brush in her underwear drawer... There are many of us here, we all can confirm that yours is far from a unique situation.
For D, it's the tablets, although she has been taking some medication for more than two
years, ALL tablets are now very suspicious, are likely to cause problems, (and I don't need the damned things anyway) have been issued by bits of lasses, who don't really know what they are about.
Food? No appetite, no taste in anything, all tastes like eating cardboard, lost almost 10 kgs in nine weeks, stomach pains, headache constantly, etc. etc.
I learned one thing when her new Admiral Nurse called last week; such patients are more deeply influenced by facial exression than what is actually coming out of our mouths, and 'Stop shouting!' when I am not shouting - apparently another commion sympton.
Continually threatening to 'leave and go home' if something said does not please, has only been here a week (actually 15 years in this dwelling) and came by bus, to find me standing at the door to meet her, although I am definitely NOT the same person she lived with previously. I went out to an evening soccer match last week, got home around 10pm, she met me at the door with, 'Oh, it's you, you decided to come here, I tjought you'd have gone straight home', and then showed me around the place like a complete stranger, pointing out the improvements she had made.
As you read around the posts, I just hope you will find things that help..

Hi Leymoorlord,
Thank you for your message.
My OH is the same with tablets. What do I need them for? My father never took any tablets, never had a day off work, what good will they do me??? Luckily my daughter is a CPN and he will listen to her advice so I asked her to phone and speak to him, after which he agreed to take them☺
He is also suspicious of everyone. On Sunday he didn't want to see anyone, if a visitor called I was to tell them to go away as they all talk nonsense and make up things about him!
He tells people that his confusion must have been caused by a bump on the head. In actual fact there was no bump on the head but when I try to tell him that he gets angry.
I am also the stranger in the house, as you may have read, I am constantly asked who I am, if I'm staying for a while or overnight.
Last night I boiled the kettle and asked if he wanted to make himself a cuppa. He had no idea where to start so eventually I suggested he get a cup out of the cupboard. I also had to cut his dinner up for him yesterday as he appeared to have forgotten how to do it.
We always enjoyed gardening together but now he doesn't seem to be able to understand which garden tool does what.
Today we have "lost" a handwash dispenser and the filing system containing bank statements, bills, letters etc looks like it was organised by a small child. I had been tidying it up daily but now I've sort of given up. Perhaps I should try locking it away somewhere but then my OH would get agitated as he seems to want to rifle through the paperwork several times a day.
I have read many of the posts on the forum and they have been a big help. I know my post is entitled "feel so alone" BUT that is purely because I had no support and felt as if the hospital discharged OH without giving me much idea of what I should do or how to do it. My family are hundreds of miles away but do phone daily. Having a CPN in the family is great but as with most people it is so different when a member of your own family is the one who is needing help.
Thank goodness for Google and for forums like this one. X

 

[LadyA]

Margaret, you need another file, with non important papers in it for your husband to go through, if that's something he likes to do! Anything important, you need to hide away safely.
As regards him saying his confusion must have been caused by a bump on the head - maybe next time try something along the lines of "poor you. Well, I'm sure you'll be feeling much better soon, because the doctor gave you some tablets to help."

 

[Margaret59]

Margaret, you need another file, with non important papers in it for your husband to go through, if that's something he likes to do! Anything important, you need to hide away safely.
As regards him saying his confusion must have been caused by a bump on the head - maybe next time try something along the lines of "poor you. Well, I'm sure you'll be feeling much better soon, because the doctor gave you some tablets to help."

Hi LadyA,

Thank you for your message. My daughter had actually said I should respond as you suggested.
I think I have just been so over tired this last wee while that I wasn't thinking straight and so said the wrong thing.
I will try what you said with reference to the paperwork and see what happens.
He always dealt with all the paperwork and bills prior to his illness and I have suggested to him that perhaps I could do it all now. He gets angry about it though and says that I'm more or less saying that he can't do anything right.
I do try to assure him that is not what I'm saying. X

 

[Rosnpton]

Hi this sounds familiar.
Mum is now in a care home since feb16, but was cared for at home mainly by dad whom she lived with and me. We only had carers twice a day from Dec 15 til Feb 16.due to her getting medication muddled, and dad not really that interested at that time in helping, we had her meds put in dos sets- brill, I thought. That will help.
Went round one morning to find she had carefully 'opened' all the little Windows on a weeks pack and was organising the tablets in neat little piles. Seemed to be around the size and colour.so near small pink and white together. A blue tablet weirdly in with yellow capsules etc etc. I was quite impressed as she has terrible arthritis in her hands and she must have spent at least an hour (since waking and before I got there) sorting these out to her satisfaction. She was so proud to show me what she had done I couldn't moan. Did have to carefully gather them all up and safely dispose of them the spend ages trying to get the 'lovely officious ' receptionist at the gps.to understand why I needed an urgent prescription![
Like you we have medics in the family- grand daughter Peadiatritian so has been known before mum went into ch,to get a txt asking her to 'surprise grandma with a call regarding the wonderful tablets she is on'
Whatever works is worth doing
Thinking of you
RosQUOTE=Margaret59;1399976]Hi LadyA,

Thank you for your message. My daughter had actually said I should respond as you suggested.
I think I have just been so over tired this last wee while that I wasn't thinking straight and so said the wrong thing.
I will try what you said with reference to the paperwork and see what happens.
He always dealt with all the paperwork and bills prior to his illness and I have suggested to him that perhaps I could do it all now. He gets angry about it though and says that I'm more or less saying that he can't do anything right.
I do try to assure him that is not what I'm saying. X[/QUOTE]

 

[Alicenutter]

Margaret59, I'm sorry you feel so alone. My husband's symptoms have advanced very rapidly since diagnosis of BvFTD in February 2016. We were at the "how many people live here" stage a year ago. Since December he has been either in hospital or in a home, as I could no longer deal with his aggression towards me. He now sometimes doesn't know me at all. The rapid progression has left me a bit breathless, but I still feel that there is a strong and deep bond between us that somehow overrides the disease. I don't know if this helps at all. You MUST have breaks, or you will burn out, and you have to learn to go with, not against, his flow. Don't correct, deflect.


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[Margaret59]

Margaret59, I'm sorry you feel so alone. My husband's symptoms have advanced very rapidly since diagnosis of BvFTD in February 2016. We were at the "how many people live here" stage a year ago. Since December he has been either in hospital or in a home, as I could no longer deal with his aggression towards me. He now sometimes doesn't know me at all. The rapid progression has left me a bit breathless, but I still feel that there is a strong and deep bond between us that somehow overrides the disease. I don't know if this helps at all. You MUST have breaks, or you will burn out, and you have to learn to go with, not against, his flow. Don't correct, deflect.


Sent from my iPhone using Talking Point

Hi Alicenutter,
Thank you so much for your advice.
My OH was quite distressed tonight and wanted to know if I would still be here in the morning. At first I thought it was because most of the time he seems to think that I am just "someone" who comes to look after him. He then proceeded to say that if it got to much for ME then HE would go somewhere else. He talked about having "this illness" as he calls it. Of course I reassured him that I would always be here, that this is our home and that he was not going anywhere.
He had been very quiet for the majority of the day and I find that he almost looks lost. As if he is trying to piece together what is going on.
I just hope that we do not have to wait too long before we see a specialist. Although I think the diagnosis of dementia is inevitable I am still terrified at the thought of hearing it.
I'm planning to go for a walk with my other half tomorrow, I had planned to get out today but he wanted to stay in the house. I don't think that this is good for him as I'm worried that he will become withdrawn but as you said I should "go with the flow".
My thoughts are with you. Please keep in touch as I know that talking helps.
Love and hugs, take care, Margaret x