Hello, to a bunch of fellow travellers.

SeaGirl

Registered User
Nov 23, 2023
22
0
Hi,

I am relatively new to this business of being a full-time carer, and joined you lovely chaps and chapesses as I have been finding things a tad tough of late. My husband has Lewy Body Dementia, and this is proving quite the challenge for us both. It'll be great to speak to others, whether related to LBD or not.

Cheers, SeaGirl
 

Gosling

Volunteer Host
Aug 2, 2022
1,990
0
South West UK
Hello @SeaGirl and welcome to this friendly and supportive forum, There is a wealth of shared experience of dementia to be found here so I am glad you have found us.
I am sorry to read about your husband's diagnosis. As you say the word challenging doesn't always cut it does it. It's hard, very hard, and I'm sure you are finding it tough. I do feel for you.
I am sure that you will find it helpful to find out what others are saying, join in conversations, ask any particular questions you may like to, or just when you need, to let off a bit of steam. You will always find understanding here from members that really want to help.
 

SeaGirl

Registered User
Nov 23, 2023
22
0
Thanks, Gosling. I am SO grateful to have finally taken the leap to join. I think this is going to be a lifeline.
 

Stelliella

New member
Mar 1, 2024
3
0
Hi,

I am relatively new to this business of being a full-time carer, and joined you lovely chaps and chapesses as I have been finding things a tad tough of late. My husband has Lewy Body Dementia, and this is proving quite the challenge for us both. It'll be great to speak to others, whether related to LBD or not.

Cheers, SeaGirl
I sympathise with you. I am new to this group and have to admit that I sometimes struggle to cope. It’s the hallucinations at night that means broken sleep and I am always tired. I dread the incontinence time. It really is a challenge for both of us also. It makes me feel very guilty that I dread the future he is such a lovely man and I see him changing daily. Stelliella
 

Stelliella

New member
Mar 1, 2024
3
0
Thankyou Izzy, it’s nice to find others to chat to about all the problems to come and hopefully advice on how best to deal with all the stages.
 

leny connery

Registered User
Nov 13, 2022
468
0
I sympathise with you. I am new to this group and have to admit that I sometimes struggle to cope. It’s the hallucinations at night that means broken sleep and I am always tired. I dread the incontinence time. It really is a challenge for both of us also. It makes me feel very guilty that I dread the future he is such a lovely man and I see him changing daily. Stelliella
 

leny connery

Registered User
Nov 13, 2022
468
0
Ditto likewise, Stelliella. Best not to think about the worse days to come. baby steps, get every day done, one day at a time
 

Charlie bougie

Registered User
Feb 6, 2024
30
0
I like your advice one day at a time and Doris Day song Que Sera, Sera ... what ever will be, will be. My husband also has Alzheimer's and I can't help to think what tomorrow will be...prayers for you all to keep you strong
 

leny connery

Registered User
Nov 13, 2022
468
0
charlie, of course I think , I know, what is coming. But I try not to be sad about it today. There is enough to be thinking about today, how to react to him forgetting me, him thinking I am his mum more and more often. Knowing that holidaying with him is no longer viable. inviting friends to dinner which we used to enjoy now also is a bit too much for me to do.But ok, I do tea instead, even if I buy the cake or biscuits from the shop. I take him out for a small day outs instead of foreign vacations. The thought of incontinence in future does intrude sometimes, or maybe aggressive behaviour? But I do not know, right? What and when it will happen? so I push the thought away. today, after hail stones and frosty morning , it is bright and sunny. so I will get him dressed and take us out for a little walk. Small mercies. Good luck to all of us carers. Wishing each other strength to continue. Much love
 

SeaGirl

Registered User
Nov 23, 2023
22
0
I sympathise with you. I am new to this group and have to admit that I sometimes struggle to cope. It’s the hallucinations at night that means broken sleep and I am always tired. I dread the incontinence time. It really is a challenge for both of us also. It makes me feel very guilty that I dread the future he is such a lovely man and I see him changing daily. Stelliella
Hi Stelliella, It is so, so hard to see the progressive changes in the men we love. I find it more cruel still, knowing that my darling husband is all too aware that he can't now do the things, like cooking and photography, that he used to love. I know what you mean about dreading the future (I do too, and it does scare me) but have found that it's better to try to focus on making the absolute best of each day. We'll get exhausted, frustrated sometimes, and overwhelmed too - we are only human - but remembering that and forgiving ourselves really is important. Keep hold of the fact that we are trying to do as much as we possibly can to look after the people who are so precious to us. It's hard walking on shifting sands every day as this brutal disease means certainty is something we simply cannot take for granted. Hugs, SeaGirl.
 

Stelliella

New member
Mar 1, 2024
3
0
Hi Stelliella, It is so, so hard to see the progressive changes in the men we love. I find it more cruel still, knowing that my darling husband is all too aware that he can't now do the things, like cooking and photography, that he used to love. I know what you mean about dreading the future (I do too, and it does scare me) but have found that it's better to try to focus on making the absolute best of each day. We'll get exhausted, frustrated sometimes, and overwhelmed too - we are only human - but remembering that and forgiving ourselves really is important. Keep hold of the fact that we are trying to do as much as we possibly can to look after the people who are so precious to us. It's hard walking on shifting sands every day as this brutal disease means certainty is something we simply cannot take for granted. Hugs, SeaGirl.
Thankyou for your adviceSeagirl, I will just have to knuckle down as best I can, I just had a bad day yesterday, that’s the thing, they stop doing their hobbies. We joined several dementia groups, the local library has a very good one, very social and he enjoys chatting to other people with dementia, also the Parkinson’s group, likewise and because he also has macular degeneration we go to the local blind and partial vision, which is excellent. These things give him stimulation and a chance to reminisce. All come with tea and cake and biscuits, so not all bad. I thank you for your reply and hope that things a not too much stress. I tend to go up and down each day, some days good others he has bouts of confusion and hallucinations. Hugs back Stelliella x
 

leny connery

Registered User
Nov 13, 2022
468
0
Hi Stelliella, It is so, so hard to see the progressive changes in the men we love. I find it more cruel still, knowing that my darling husband is all too aware that he can't now do the things, like cooking and photography, that he used to love. I know what you mean about dreading the future (I do too, and it does scare me) but have found that it's better to try to focus on making the absolute best of each day. We'll get exhausted, frustrated sometimes, and overwhelmed too - we are only human - but remembering that and forgiving ourselves really is important. Keep hold of the fact that we are trying to do as much as we possibly can to look after the people who are so precious to us. It's hard walking on shifting sands every day as this brutal disease means certainty is something we simply cannot take for granted. Hugs, SeaGirl.
I second that , Seagirl, Found my man standing in the middle of our kitchen looking helpless and lost, after the FOURTH attempt to make me a hot drink was heartbreaking. He too is still aware of his confusion and broken brain. Double whammy isn't is dealing with our own tiredness and sadness, and our loved one's frustration and confusion too. group hug, carers!
 

SeaGirl

Registered User
Nov 23, 2023
22
0
I second that , Seagirl, Found my man standing in the middle of our kitchen looking helpless and lost, after the FOURTH attempt to make me a hot drink was heartbreaking. He too is still aware of his confusion and broken brain. Double whammy isn't is dealing with our own tiredness and sadness, and our loved one's frustration and confusion too. group hug, carers!
Group hug is always welcomed. 🤗
 

SeaGirl

Registered User
Nov 23, 2023
22
0
Hi Charlie bougie,
All any of us can do is our best. There's no point gilding the lily, it's tough as this disease is horrible. But, we do have a secret weapon in our armoury, and that is one another - with the listening ear and often great advice posted here, we can do better than if we simply try to struggle on alone.