Day by day

[NaughtyNana]

Hi NaughtyNana - what a great name by the way. Just wondered if Golf in Society would be of any interest - it is a weekly 2 hour session of golf activity for people with dementia at a local golf club. - cost £20. My husband goes and they do a bit on golf range and putting and a bit on course. 2 lovely young men look after him and I just drop off and pick up. it is a charity started by a man who played golf with his dad during his decline and started the charity about 5 years ago and it is beginning to expand worldwide. Just google Golf in Society if interested to see if available in your area.

Hi Jennifer, sorry for the delay in writing a reply. The golf sounds great but I see you are in Southampton and I am Sth Buckinghamshire, so is there a website where I could see if there is one in my area. I think my hubby would like that and we still have his golf clubs. He will meet people with the same interest and I will also try the Mens Shed as he may also try that. Even though he is not a DIY enthusiast never say never. He is so much better when he is in company.
We did try a dementia group but it wasn't his cup of tea, as most members were further down the line than him and it just showed him what the future held.
It's amazing how people forget you when something like dementia strikes. Only one person from a society he belonged to has been to see him and not one from his golf club where he was a member for 35 yrs.
Thank you so much for informing me re the golf, I am feeling optimistic about it.

 

[Izzy]

This is the Golf In Society website -

Transforming The Lives Of People With Chronic Illnesses Through Golf

Tailored golf sessions for people living with chronic illnesses like Dementia, Parkinson's disease, Loneliness & Depression. Creating respite for unpaid carers.

golfinsociety.com

 

[NaughtyNana]

This is the Golf In Society website -

Transforming The Lives Of People With Chronic Illnesses Through Golf

Tailored golf sessions for people living with chronic illnesses like Dementia, Parkinson's disease, Loneliness & Depression. Creating respite for unpaid carers.

golfinsociety.com

Thank you, I found it and their Facebook page. Unfortunately there isn't one in my area, which is ironic as we are surrounded by gold clubs. Off the top of my head I could name 10 within a 10 mile radius.
I would gladly drive him, but there isn't one near.
I feel gutted as I know my hubby would enjoy that enormously and give him something to get out of bed for in the mornings. I could cry as he doesn't doesn't have much to enjoy.
If I have the time I may write to all the golf clubs in my area asking if they would consider offering help.

 

[Izzy]

I was wondering if your local clubs might be able to help. This site seems to suggest that many clubs are looking into supporting people with a dementia

Club support - England Golf

www.englandgolf.org

 

[jennifer1967]

Hi Jennifer, sorry for the delay in writing a reply. The golf sounds great but I see you are in Southampton and I am Sth Buckinghamshire, so is there a website where I could see if there is one in my area. I think my hubby would like that and we still have his golf clubs. He will meet people with the same interest and I will also try the Mens Shed as he may also try that. Even though he is not a DIY enthusiast never say never. He is so much better when he is in company.
We did try a dementia group but it wasn't his cup of tea, as most members were further down the line than him and it just showed him what the future held.
It's amazing how people forget you when something like dementia strikes. Only one person from a society he belonged to has been to see him and not one from his golf club where he was a member for 35 yrs.
Thank you so much for informing me re the golf, I am feeling optimistic about it.

hi @NaughtyNana you have replied to the wrong person. i didnt share about golf. glad to help with mens sheds. my husband has COPD so is limited to what he does but enjoys going for the banter and is the shed wind up merchant. hope you get something sorted

 

[SeaSwallow]

Sometimes you just have to laugh. Hubby was having a doze after dinner. When he woke up he asked if the wedding in our garden was still going on, what wedding, the one in our garden. I gently told him that he must have been dreaming and he just said - oops.

 

[jennifer1967]

mine came out with there should be a mens mascara and its a bit sexist that there isnt one.

 

[SeaSwallow]

Hubby told me this morning that he has been having hallucinations about being back at his childhood home. He was not distressed as such but did say that he knew that that was a sign of him getting worse.
Sometimes I find his awareness of the progress of his dementia hard to bear.

 

[jennifer1967]

mine says the same that hes got worse and his memory has got worse too. he says that he cant manage to talk in a group but with individuals or smaller group.

 

[SeaSwallow]

mine says the same that hes got worse and his memory has got worse too. he says that he cant manage to talk in a group but with individuals or smaller group.

It is so hard to see this slow decline and to know that our loved ones are only going to get worse.

 

[SeaSwallow]

Over the last two weeks Hubby has been having awful nightmares, approximately every two to three days and mainly in the early mornings. This is a feature of Lewy Body Dementia. He was very distressed and confused after the one this morning, and told me that he just could not cope any more. All I could do was to hold him until he calmed down, now he is sleeping as these exhaust him. He has gone through periods like this before and then the nightmares stopped again or were not as bad. He has his next four monthly hospital review in August so hopefully the MH doctor will be able to suggest something to help.
A few times recently hubby has said that he thinks that I should arrange for him to go into a nursing home, but he really is not at this stage yet, he can wash and dress himself, eats well and is able to get out into the garden and wander about, albeit slowly. He reads, does a bit of studying (although I don't know how much he is retaining) and loves his YouTube videos. His feeling is that I have no life because of his condition and that if he was in a NH I would have more freedom. But, presently I don't see it like that, someday it might be necessary but not now. We have help with the garden and I am arranging help with the housework. I am still able to leave him to go to various clubs or for my walks.
I know that I have said this before, I just hate this disease and what it does to our loved ones, to see hubby's frustration when he has to ask the same question over and over again or cannot find the words he wants to say. Or when he says that he hates the thoughts that come into his head and that come out as cruel words such as accusing me of having an affair. It is just so heartbreaking.
Reading this it just seems such doom and gloom, but my old hubby is still there, sometimes his old sense of humour comes out, like the way a couple of days ago he hid behind the back door so that he could try to make me jump as I came back in, or he talks about the fun times we used to have.

 

[SeaSwallow]

This is just a vent but I am really quite annoyed with my hubby's family at present (when I was out for a walk yesterday I used some very bad language under my breath when thinking about it). Promised visits do not materialise and although his memory is not good he does remember that he has not seen them for quite a long time. He does not say much but i know that it does upset him. I am not expecting weekly visits but just now and again would be appreciated. Not much to ask is it?

 

[SeaSwallow]

Hubby was quite upset this morning, he had a slight accident on the way to have a pee, not the first time but he always thinks that it is. So out came the Dr Beckmanns (thank you sir you are a life saver) and five minutes later the job was done. It was much harder to reassure hubby that he would not be put in a NH just because he had a little mishap. Now he is sleeping, his default if he gets upset.
It is so, so hard to see the changes in my beloved hubby, he was always such a proud man.

 

[SeaSwallow]

Oh bu&&er Lewy Body, hubby has just shouted that someone was in the bed beside him and that they had then disappeared. Then he went straight back to sleep. Hate, hate this disease.

 

[NaughtyNana]

Good morning everyone, I haven't been on the site for a while due to events I'm sure you all are familiar with, but I just wanted to thank you for your contributions. They help me enormously. I replied to Jennifer by mistake re suggestions about Golf for Dementia, so sorry about that, but I have emailed the company approximately on3-4 weeks ago and disappointingly did not receive a reply. Our eldest son is Captain of his Golf Club this year and has said the company approached them and it's before the committee as I write, so watch this space. Unfortunately there isn't one in my area. There are so many contributions on this page that I identify with, we all seem to be at the same level re our OH in this dreadful disease, and yes I also hate it. I am going to try Men's Shed for him and although he is definitely not a DIYer he does like talking which is becoming more difficult for him but company may help. He doesn't' have He has Vascular Dementia and nightmares effect him too, usually in the early hours of the morning, and are very stressful as they are rarely happy and like someone shared when this happens he doesn't want to live. Well he doesn't want to live most of the time. He has always been the cup half empty person always looking at the bottom line whereas I'm a cup half full unless I am stressed about something and I can't sleep and tremble, palpitations etc. Hubby's dementia has progressed and his confusion is more apparent and more frequent. He holds his hands together shaking, mumbling "somethings wrong" but can't determine what is wrong. It's distressing to witness and my heart bleeds to see this lovely man who held down a responsible position, being subject to a terrible disease of which there is no cure. He doesn't deserve that.
There are times like yesterday when he had a good day so we went out for lunch but he gets very tired. I have said before that he sleeps for England and at one time I would be very upset by this but now I just think when he's asleep he is not dwelling on his illness and being confused etc. His nightmares are not every day now as seem to have settled down to a couple of times a week. Like others he has a few problems with his waterworks and has on occasion not quite managed to get to the loo. He wears tena pads due to a prostate operation years ago, and hasn't been able to control his bladder very well since. Dribbles.
He's never rude or aggressive so I'm grateful for that.
Thank you for letting me share as I don't see many people so it's lovely to unburden myself.

 

[jennifer1967]

Good morning everyone, I haven't been on the site for a while due to events I'm sure you all are familiar with, but I just wanted to thank you for your contributions. They help me enormously. I replied to Jennifer by mistake re suggestions about Golf for Dementia, so sorry about that, but I have emailed the company approximately on3-4 weeks ago and disappointingly did not receive a reply. Our eldest son is Captain of his Golf Club this year and has said the company approached them and it's before the committee as I write, so watch this space. Unfortunately there isn't one in my area. There are so many contributions on this page that I identify with, we all seem to be at the same level re our OH in this dreadful disease, and yes I also hate it. I am going to try Men's Shed for him and although he is definitely not a DIYer he does like talking which is becoming more difficult for him but company may help. He doesn't' have He has Vascular Dementia and nightmares effect him too, usually in the early hours of the morning, and are very stressful as they are rarely happy and like someone shared when this happens he doesn't want to live. Well he doesn't want to live most of the time. He has always been the cup half empty person always looking at the bottom line whereas I'm a cup half full unless I am stressed about something and I can't sleep and tremble, palpitations etc. Hubby's dementia has progressed and his confusion is more apparent and more frequent. He holds his hands together shaking, mumbling "somethings wrong" but can't determine what is wrong. It's distressing to witness and my heart bleeds to see this lovely man who held down a responsible position, being subject to a terrible disease of which there is no cure. He doesn't deserve that.
There are times like yesterday when he had a good day so we went out for lunch but he gets very tired. I have said before that he sleeps for England and at one time I would be very upset by this but now I just think when he's asleep he is not dwelling on his illness and being confused etc. His nightmares are not every day now as seem to have settled down to a couple of times a week. Like others he has a few problems with his waterworks and has on occasion not quite managed to get to the loo. He wears tena pads due to a prostate operation years ago, and hasn't been able to control his bladder very well since. Dribbles.
He's never rude or aggressive so I'm grateful for that.
Thank you for letting me share as I don't see many people so it's lovely to unburden myself.

no need to apologize. mine doesnt do anything at the shed but its mens conversation as opposed to womens. men seem to be able to chat for england as well. hes the shed wind-up. i treasure the 2 hours twice a week.

 

[SeaSwallow]

The last few weeks have been hard, I really can see such a difference in Hubby's condition. His short term memory has got worse, his walking is occasionally bad and the moments of confusion are more frequent. Hubby has even told me that he sometimes is not sure where he is.
A couple of weeks ago I went out for a meal with my sisters, I told him where I was going and even left him a note, when I arrived back he started cursing at me and accused me of having an affair because I had not told him where I was. Later on he calmed down and sort of said he was sorry, but I think that from now on if I am going out I will need to arrange a sitter service.
For over a week now he has been convinced that he had a fight with a neighbour and has been most agitated over it, my normal distraction techniques are just not working and it is so exhausting.
On the good side, we have had some lovely afternoons sitting in the sun and just talking, but then he forgets and tells me that I never talk to him and that hurts. The only comfort is that at least he did enjoy the time in the garden.

 

[Izzy]

It's hard @SeaSwallow. I'm glad you have some positives as well as the down times.

 

[SeaSwallow]

I heard hubby talking this morning, asked him what he needed m, and he said he was talking to the (invisible) person beside him in bed. This has happened before and I think is quite common with LBD.

 

[SeaSwallow]

Oh dear, hubby has been holding conversations with someone for the last couple of hours. Sometimes the language has been quite colourful. Wonder what the ‘other person’ is saying. Oh for a nights sleep.