Feeling a bit down.

[PaulineEB]

My OH was diagnosed with Dementia last year although all the signs were there for over 3 years it was the first time he had agreed to see the doctor. The mental health nurse came and assessed him, offered medication..........no he didn't want that,offered him a place at a weekly coffee morning group where he could meet other people & I could go with him........no he didn't want that either so it was left that should the time come when he wanted meds or to go to a group I would contact the doctor to make arrangements.

In a lot of ways I am luckier than most posters on here he is in his "happy bubble" admittedly he can't remember anything at all that I tell him for more than 2 mins, he has to be constantly reminded that having a shower is a good thing and as for his sideburns well he has to be Wolverines biggest fan. Every so often when the Worzel Gummidge look gets too much he will let me trim his hair and his sideburns. He says little and does virtually nothing apart from sitting on the sofa holding our dog, unless I ask him to, but tbh it is far easier to do it myself. I do worry a bit that he is isolated as we only moved here last year and have no friends,is difficult to make friends when you never go anywhere.

Although I can leave him for a few hours whilst I have my hair done there is no way that I could leave him for a whole day he wouldn't remember to eat or drink and although he could make a cup of coffee I doubt very much that he would think of it.

I do get fed up sometimes and miss having conversations,and like a lot of people I can't help thinking that being retired was never meant to be like this.
I think the biggest upset for me was him not being able to drive anymore, unfortunately I never learned and although I did think seriously about learning I rather think that 70 is a little old to start. So as I said before I am luckier in a lot of ways than many posters on here but sometimes I do feel somewhat depressed and lonely.

 

[jaymor]

Hi Pauline and welcome to Talking Point.

Could you possibly go to the coffee morning on your own to see what it is like?

I was not sure to start with, I was afraid that everyone would be further down the road and older as my husband was early onset Alzheimer's. I was amazed, I could not tell who had dementia and who was a Carer. Everyone was so friendly so we started to go and though my husband passed away 12 months ago I still attend the monthly meeting. I have made many friends, who understand and I can feel comfortable with. We have fun too.

The meeting is run by the Carers Assiciation and is 2 hours a month with a buffet lunch and as much coffee and tea as you can drink.

It's sad that you feel isolated and there are people out there, dealing with the same problems, with understanding, who could become your friends.

Good luck and keep ousting.

 

[tigerlady]

Welcome to TP. You will have lots of friends here to share your feeleings with and we all understand what you're going through. Maybe look into getting a sitter so you could go out and make friends. There is probable a carer support group in your area as well. Sometimes just writing your feelings down can make you feel better

 

[rhubarbtree]

Hi Pauline,

I am in a very similar place to you. One month to my 70th with a husband who is content to sit around all day (Alzheimer's). I am also now on personal hygiene duty, reminding to shower and whipping away dirty clothes.

I took the initiative and enrolled OH in one day a week day care because I felt he needed to have other company. He has very short term memory like your OH so does not remember that he has been or is going to day care. We just get ready and go. He cannot tell me what has happened at day care but I can tell if he has enjoyed it by his manner. He will say "they are nice people". Conveniently my book group meets on the same day so I can attend without worry.

We did have some input from an Occupational Therapist and it helped me to realise how much of my life I had given up. So I am slowly joining in again - U3A, history groups (organisers understand I might not attend every meeting). Think we need to keep a little of ourselves ticking over.

If you tell OH nurse recommended the coffee morning will he remember his earlier refusal? I would give it a go just to keep in touch with the world.

 

[Shedrech]

hello PaulineEB
a warm welcome from me too
if it was agreed that you would make contact again to make arrangements ...
maybe it's time for you to become a bit sneaky - you want to go to the coffee morning so go and take your OH too, just don't tell him anything beforehand - you'll just happen to be near that location for some reason (a bit of window shopping?) and pop in for a mid morning coffee - your OH doesn't need to know it's anything other than a normal café and all the others are just regulars, that's how they know each other - then say how friendly everyone was and you might keep it in mind for next time you are in town, which of course will be for the next session - call it your treat ...
as for the meds - something similar - contact the consultant and ask if your OH can start the meds (may not be quite this simple, unfortunately, if they insist on having his explicit agreement) - then tell your OH they are just a vitamin supplement or something he would take; maybe even find a supplement that looks similar so you can take one at the same time, and say it's the one recommended at the pharmacist for over 65s (one for men and yours for women)....
and have you had an assessment of your OH's care needs by the Local Authority Adult Services? - as it might be possible to organise a sitter to stay with him while you have a few hours to yourself (the sitter could be introduced as someone who needs some help from your OH, a friend from down the road who wants to get out of the house for a bit ...) - you, too, have a right to a carer's assessment, which may mean you are offered funds to pay for the sitter
and here's a link to the main AS site to check for any local services
https://www.alzheimers.org.uk/info/20011/find_support_near_you?_ga=1.53206251.213745934.1462100281#!/search
best wishes

 

[jennypie]

Hello PaulineEB
Find out about day care I dreaded taking my oh and leaving him I started at half an hour an hour then the day with no problem except myself feeling guilty! I don't tell him where we're going he'd only forget and the worry is he'd say he didn't want to go what's the point of giving him the information when he won't remember anyway. You need time to yourself to recharge and he needs company and stimulation good luckx


Sent from my iPad using Talking Point

 

[Casbow]

Hello PaulineEB. Have you had anyone round to access your husband and your needs.? If they can help you in anyway? The first person that came to us was from Alzheimers Society. She was so helpful and kind. Before i knew it he was assessed for Attendance Allowance and given places to try for day care. I went on a six week,once a day for 2 hours course for carers, whilst my husband went with the other "patients" and had a couple of people making tea and sitting with them. He always came out laughing and happy. Also Age concern got in touch to see what they could help with. I recommend that you get him to daycare for at least one day a week to start with. I never did (thought I would always be ok to manage) but I was very wrong and as he got worse and I needed him to go he refused and then when I talked him into trying it he only stayed for 6 weeks., becoming to difficult for them to keep there. The sooner they go and make friends the better as then it will be something they get used to whilst they can still socialise a bit.And there are companies like Crossroads that do a sitting service. Good luck,hope things improve a bit.xx

 

[Dynamo]

from dynamo

My OH was diagnosed with Dementia last year although all the signs were there for over 3 years it was the first time he had agreed to see the doctor. The mental health nurse came and assessed him, offered medication..........no he didn't want that,offered him a place at a weekly coffee morning group where he could meet other people & I could go with him........no he didn't want that either so it was left that should the time come when he wanted meds or to go to a group I would contact the doctor to make arrangements.

In a lot of ways I am luckier than most posters on here he is in his "happy bubble" admittedly he can't remember anything at all that I tell him for more than 2 mins, he has to be constantly reminded that having a shower is a good thing and as for his sideburns well he has to be Wolverines biggest fan. Every so often when the Worzel Gummidge look gets too much he will let me trim his hair and his sideburns. He says little and does virtually nothing apart from sitting on the sofa holding our dog, unless I ask him to, but tbh it is far easier to do it myself. I do worry a bit that he is isolated as we only moved here last year and have no friends,is difficult to make friends when you never go anywhere.

Although I can leave him for a few hours whilst I have my hair done there is no way that I could leave him for a whole day he wouldn't remember to eat or drink and although he could make a cup of coffee I doubt very much that he would think of it.

I do get fed up sometimes and miss having conversations,and like a lot of people I can't help thinking that being retired was never meant to be like this.
I think the biggest upset for me was him not being able to drive anymore, unfortunately I never learned and although I did think seriously about learning I rather think that 70 is a little old to start. So as I said before I am luckier in a lot of ways than many posters on here but sometimes I do feel somewhat depressed and lonely.

Hello Pauline looks like we've joined within days of each other, was sorry to see that you feeling down but everyone gets those times if they are honest, I think everyone else seems to have covered all the avenues for you to try, I know the day centre where my husband used to go was my saving grace, but he has had to give that up as he was ill last year and now doesn't go out of the house much and is still very frail, my social worker arranged for me to have six hours per week when they will pay for a carer to sit with my husband so that I can get out so I have taken it in 2 3hr sessions so that twice a week I can go out to lunch with friends - just to have some "me time" either on my own or with friends - I don't know how your social services work. Are you a member of a Church or some other organization because sometimes they can be used to give lifts etc to people who can't drive. Good luck hope you'll feel supported now by the other members of this group

 

[Pippa J]

Pippa J

My OH was diagnosed with fronto temporal lobe dementia/Alzheimer's 20months ago so speech is a real problem for him. In many ways he still functions well, but he doesn't really feel there is anything wrong. I am suffering from anxiety and feel that everything is getting out of control. I don't know what to do. Am seeing the doctor and an NLP lady but still not sure where to go next. I am now OCD about bugs in the house and this is not helping him or me and I feel so exhausted by it all and really scared because I don't want to think about the future

 

[WelshKat]

My OH was diagnosed with fronto temporal lobe dementia/Alzheimer's 20months ago so speech is a real problem for him. In many ways he still functions well, but he doesn't really feel there is anything wrong. I am suffering from anxiety and feel that everything is getting out of control. I don't know what to do. Am seeing the doctor and an NLP lady but still not sure where to go next. I am now OCD about bugs in the house and this is not helping him or me and I feel so exhausted by it all and really scared because I don't want to think about the future

Hello PippaJ,
I'm fairly new on here too, and like you my husband also has fronto-temporal dementia. He was diagnosed a couple of years ago, but has probably been in the grip of it for quite a bit longer than that. I can understand totally that you feel like everything is spiralling out of control - I have felt that too (along with the rest of us on here). We are all looking for advice, solutions etc., and all I can say is that you will find some solace on TP. I look through it avidly before I go to bed and knowing that we're all in this together and that everyone understands is so vital. It somehow makes it easier to bear because you can sound off about something and somebody will listen. Good luck, stay strong and keep posting.

 

[Pippa J]

Pippa J

Hello PippaJ,
I'm fairly new on here too, and like you my husband also has fronto-temporal dementia. He was diagnosed a couple of years ago, but has probably been in the grip of it for quite a bit longer than that. I can understand totally that you feel like everything is spiralling out of control - I have felt that too (along with the rest of us on here). We are all looking for advice, solutions etc., and all I can say is that you will find some solace on TP. I look through it avidly before I go to bed and knowing that we're all in this together and that everyone understands is so vital. It somehow makes it easier to bear because you can sound off about something and somebody will listen. Good luck, stay strong and keep posting.

Thanks for responding WelshKat and for your good wishes. It's good to be able to share fears and feelings about this awful disease with people who know what it's like. glad to know that I'm not the only one feeling out of control. I wish you well and thanks again.

 

[dancer12]

My OH was diagnosed with fronto temporal lobe dementia/Alzheimer's 20months ago so speech is a real problem for him. In many ways he still functions well, but he doesn't really feel there is anything wrong. I am suffering from anxiety and feel that everything is getting out of control. I don't know what to do. Am seeing the doctor and an NLP lady but still not sure where to go next. I am now OCD about bugs in the house and this is not helping him or me and I feel so exhausted by it all and really scared because I don't want to think about the future

Hi Pippa J:

Welcome to TP and the wild ride of dementia. There will be good days and bad days. The good days you cherish. The bad days you rant & rave on TP. There will be days when you feel empty and so alone but then your OH will look at you, smile and hold your hand. Cherish those moments. They say nobody's symptoms are alike but with so many members on TP, there must be someone with similarities, and if not there's lots of good advice.

My husband has FTD (frontaltemporal dementia) also and his speech isn't that great. He was diagnosed when he was 64 and he is now 69. He joined my library group, where we have coffee & cookies/birthday cake and talk. At times we have guest speakers. He was uncomfortable at first, but people made him feel welcome. He now knows people there, talks up a storm to them and enjoys it a lot. The conversing with others has given him confidence in himself and in turn improved his speech. If your OH hasn't already done so make sure to join some kind of social group, it helps not only confidence but speech also.

My husband says its not him but me, today we went to library, I had to return some books. On our way home, he asks me Did you return your books. I had to look in my bag 2/3 times to reassure myself I did return the books. Maybe it is me. I feel like I'm in the twilight zone.

Keep posting (it calms you), someone is always listening.

 

[Pippa J]

Hi Pippa J:

Welcome to TP and the wild ride of dementia. There will be good days and bad days. The good days you cherish. The bad days you rant & rave on TP. There will be days when you feel empty and so alone but then your OH will look at you, smile and hold your hand. Cherish those moments. They say nobody's symptoms are alike but with so many members on TP, there must be someone with similarities, and if not there's lots of good advice.

My husband has FTD (frontaltemporal dementia) also and his speech isn't that great. He was diagnosed when he was 64 and he is now 69. He joined my library group, where we have coffee & cookies/birthday cake and talk. At times we have guest speakers. He was uncomfortable at first, but people made him feel welcome. He now knows people there, talks up a storm to them and enjoys it a lot. The conversing with others has given him confidence in himself and in turn improved his speech. If your OH hasn't already done so make sure to join some kind of social group, it helps not only confidence but speech also.

My husband says its not him but me, today we went to library, I had to return some books. On our way home, he asks me Did you return your books. I had to look in my bag 2/3 times to reassure myself I did return the books. Maybe it is me. I feel like I'm in the twilight zone.

Keep posting (it calms you), someone is always listening.

Hi dancer12

Know what you mean about a wild ride, and good days and bad days. Today started out as a bad day but has ended as a good one. Have been seeing an NLP counsellor who is helping me with my OCD to allow me to feel safe in my home. She says the OCD has been triggered by loss of feelings of security caused by my OH's condition. I'm sure it must be a common feeling for us all, but we all respond in a different way. I wouldn't wish OCD on anyone, but in a strange way it has taken the focus off him and has allowed us both to realise that we need some outside help. So am in the process of organising this.
I agree with you about the benefit of social groups and I am glad your husband is enjoying your library group. My OH has started coming with me to my yoga classes, and everyone is so kind and helpful and he enjoys the challenge. We used to cycle in a group, but sadly this is no longer possible and this has been a big blow to us both, but I have located a drama class run by arts4dementia so this should help fill the gap. He always loved drama so should really enjoy this.
I don't know how your OH's FTD manifests itself speech wise, but in my husband's case it means he never stops talking or making odd noises, and I find myself deliberating ignoring him because it is too exhausting trying to understand him or trying to make myself understood. I think he is mainly talking to himself but nevertheless I feel guilty ignoring him.
Interesting that your OH took responsibility for returning your library books. We have moments like that, usually over food shopping which he has always enjoyed doing alone, but now needs me to provide transport.
Hope you are enjoying your new library book.

 

[dancer12]

Hi dancer12

Know what you mean about a wild ride, and good days and bad days. Today started out as a bad day but has ended as a good one. Have been seeing an NLP counsellor who is helping me with my OCD to allow me to feel safe in my home. She says the OCD has been triggered by loss of feelings of security caused by my OH's condition. I'm sure it must be a common feeling for us all, but we all respond in a different way. I wouldn't wish OCD on anyone, but in a strange way it has taken the focus off him and has allowed us both to realise that we need some outside help. So am in the process of organising this.
I agree with you about the benefit of social groups and I am glad your husband is enjoying your library group. My OH has started coming with me to my yoga classes, and everyone is so kind and helpful and he enjoys the challenge. We used to cycle in a group, but sadly this is no longer possible and this has been a big blow to us both, but I have located a drama class run by arts4dementia so this should help fill the gap. He always loved drama so should really enjoy this.
I don't know how your OH's FTD manifests itself speech wise, but in my husband's case it means he never stops talking or making odd noises, and I find myself deliberating ignoring him because it is too exhausting trying to understand him or trying to make myself understood. I think he is mainly talking to himself but nevertheless I feel guilty ignoring him.
Interesting that your OH took responsibility for returning your library books. We have moments like that, usually over food shopping which he has always enjoyed doing alone, but now needs me to provide transport.
Hope you are enjoying your new library book.

Hi:

Thanks for reply. Book is good, almost finished. Since I enjoy dancing, I'm trying to get dvd's from library incorporating dancing & fitness. Losing weight would be an added bonus. Please take time to do something that you enjoy doing away from your OH for awhile. It works wonders for patience and stress levels. My husband believes there is nothing wrong with him, it's me, so that adds a lot of stress for me. His speech is okay for now but in the future I can see myself having nobody to speak to, I think I'll buy a dog to talk to.

For now I just take one day at a time and hope for the best. It's sad to say but I am the most relaxed when I am away from him because I get nervous when I don't see him and am terrified that I can't cope with what this illness will bring in the future. I guess we're all scared of the unknown.

Take care of yourself.

 

[Pippa J]

Pippa J

Hi dancer12
If you like dancing maybe there is a programme in your area like arts4dementia that is specifically for people with dementia and their carers. As well as the drama, they offer dancing groups and also choral and music workshops and other activities.
It sounds like it should be good fun.
Like the idea of a dog,

Take care

 

[Pippa J]

Pippa J

Hi dancer
Like you I'm scared of the future and what it will bring and I try, like you, to live one day at a time. I guess it's best not to think about it too much, but then the present isn't that great either. My OH is also in denial and I'm constantly anxious; it's the isolation that's so difficult to cope with. When friends or family come it's great, but when they go away you're left alone with a stranger who can change from one minute to the next and who doesn't have a clue. It's not all bad, my OH does still cook after a fashion and generally is quite amenable but it's certainly not a life I would choose.
I am seriously considering having a dog because it would change the dynamics and hopefully bring some comfort and joy into our lives; I just don't want the added responsibility to be too much.
Oh well don't have to decide today. Have a good night

 

[dancer12]

Hi dancer12
If you like dancing maybe there is a programme in your area like arts4dementia that is specifically for people with dementia and their carers. As well as the drama, they offer dancing groups and also choral and music workshops and other activities.
It sounds like it should be good fun.
Like the idea of a dog,

Take care

Hi Pippa J:

Thanks. He's never been into dancing but things are so different now he might actually like it. Most people like music and it's supposed to be extra relaxing for people with any form of dementia. Dogs are good companions for them also. I might just check out if there's anything close by. Thanks

Have a nice day.