I totally agree! The odd hour here and there but your never totally free like before dementia, we're not complaining, we carry on but yes v tired a lot!xx
But don’t forget to find time for you!
- Thread starter Thestruggleisreal
- Start date
I have only just joined this group as I have been able to cope up until now. I realise I need some support but am unable to leave the house and leave my beloved husband on his own, I have looked through all your comments and I now realise that we are all going through the same scenarios. Well meaning friends and social workers who have never actually had any experience living with someone whom you love exploding at the slightest thing and saying hurtful things not only to me but about our dearest friends.
Thank you everyone and as you say…The struggle is real
Welcome @EvieD to this forum.
I hope you will find support in the info Alz's Soc has on it's website, and the experience of other carers.
Maybe I'm lucky, as my OH is OK with our lady from Mind (who comes for 3hrs per week), our son no.2 (who comes one evening a week) and various friends who offer me respite once in a while - the arrangements have been going for quite a while now, which also helps.
I know it's not easy to set things up, but keep trying as you need respite care. Would your OH put up with going to a day centre or a "Man's Shed" or similar? Worth a try for your sake, even if he resists going, he might like it once there.
Best wishes and a hug.
I hope you will find support in the info Alz's Soc has on it's website, and the experience of other carers.
Maybe I'm lucky, as my OH is OK with our lady from Mind (who comes for 3hrs per week), our son no.2 (who comes one evening a week) and various friends who offer me respite once in a while - the arrangements have been going for quite a while now, which also helps.
I know it's not easy to set things up, but keep trying as you need respite care. Would your OH put up with going to a day centre or a "Man's Shed" or similar? Worth a try for your sake, even if he resists going, he might like it once there.
Best wishes and a hug.
My husband has mixed dementia. Alzheimers and vascular. We have family that we see often for days out or meals. But they all work full time so I am here 24/7. He comes with me for my gp or opticians appointment because I cannot leave him alone. He hasn't gone out on his own for 2 years so if he wants to go out I have to go with him. He doesn't follow tv programmes or concentrate on anything for very long. I find reading all your comments that I am not alone. I would just love a couple of hours to myself and to have a full night's sleep. Sorry for the rant but it does help to let it out now and then.
Snap. ! Just like my OH. He's Just started a day a week at a day centre. Bliss to be able to do things
at a normal pace and visit the loo without a visitor!
My oh had Alzheimer's/ Lewy Body mixed dementia.
Not been on here for a while, came on tonight and the first thing I saw was this thread. ‘Me’ time. Huh.
My OH has Alzheimer’s plus possible vascular. He can still go out alone to local places, to the chemist, post office etc. He is, however, getting more muddled and his short term memory is bad.
Son number 1 has taken a week off work and we’ve found a place to stay in in Scotland where we’ve been before and love. Quiet, farmland, same area as son and I have gone previously but this time got a 3 bedroom place with a view to OH coming with us.
He‘s now dug his heels in, is adamant he doesn want to go, want to sit in the car for any length of time and is quite happy at home. (This despite us having lost our dog since last year who was what got OH out for walks etc He’s been very bored without her).
My dilemma is I’d be much happier if he was with us. Not really but you know what I mean! If he stays at home son number 2 will call in after work for a cuppa and discreetly keep an eye on him.
I’m wrestling with the dilemma of should I stay or should I go. Both sons say I should go and the break would be good for me but….
My OH has Alzheimer’s plus possible vascular. He can still go out alone to local places, to the chemist, post office etc. He is, however, getting more muddled and his short term memory is bad.
Son number 1 has taken a week off work and we’ve found a place to stay in in Scotland where we’ve been before and love. Quiet, farmland, same area as son and I have gone previously but this time got a 3 bedroom place with a view to OH coming with us.
He‘s now dug his heels in, is adamant he doesn want to go, want to sit in the car for any length of time and is quite happy at home. (This despite us having lost our dog since last year who was what got OH out for walks etc He’s been very bored without her).
My dilemma is I’d be much happier if he was with us. Not really but you know what I mean! If he stays at home son number 2 will call in after work for a cuppa and discreetly keep an eye on him.
I’m wrestling with the dilemma of should I stay or should I go. Both sons say I should go and the break would be good for me but….
Yes @hillyjay I know how you feel.
I haven't been brave enough to go away away.
Son no.1, who, now that he's moved further away only calls in once in a while (although we speak on the phone more often), out of the blue, said he's take a week off work, came and stay at ours to care for my OH so I could go away away. I thought what a good idea. Then doubts crept in. So I suggested we start by him taking a day off and coming to ours early'ish so I could have a whole day out and to into town, visit an exhibition, or the like,
I had a really good day. It's been a long time since I was in town with so many people milling about! Yes, I enjoyed my day, but it was strange after all these years to have no-one there to share it with, to talk about what I saw, where and what to eat, etc.. Although we have separate interests, we also have some in common and nearly always shared things.
Of course, son had no troubles, and it was probably good for him to spend that much time caring for his mum.
Now, I'm a little more confident in planning the next outing!
So @hillyjay wrestle away, and have a break (if not a KitKat!)
I haven't been brave enough to go away away.
Son no.1, who, now that he's moved further away only calls in once in a while (although we speak on the phone more often), out of the blue, said he's take a week off work, came and stay at ours to care for my OH so I could go away away. I thought what a good idea. Then doubts crept in. So I suggested we start by him taking a day off and coming to ours early'ish so I could have a whole day out and to into town, visit an exhibition, or the like,
I had a really good day. It's been a long time since I was in town with so many people milling about! Yes, I enjoyed my day, but it was strange after all these years to have no-one there to share it with, to talk about what I saw, where and what to eat, etc.. Although we have separate interests, we also have some in common and nearly always shared things.
Of course, son had no troubles, and it was probably good for him to spend that much time caring for his mum.
Now, I'm a little more confident in planning the next outing!
So @hillyjay wrestle away, and have a break (if not a KitKat!)
Thanks Chizz, it’s those doubts all the time. What if…?? You’re sure they’ll be ok…really you are….but…
Pass the KitKat - or anything else choccy related!
That’s another thing, comfort eating….😳
Oh yes, comfort eating! I find myself looking for something salty or sweet although I am not hungry. Meanwhile several extra pounds later…….must go on a diet (but I don’t).
My husband was diagnosed with Vascular Dementia in January although for the past three years I felt something wasn't right. I have been micromanaging him inceasingly.
I feel so tired emotionally and now after doing something silly to both knees, I can hardly stand up long enough to cook a stirfry.
I have MS and Osteoporosis and am frightened that I won't be able to cope much longer. Hubby seems OK, but he isn't. He leaves the hot tap running at night, leaves tools in the garden and simply cannot sort the rubbish into the correct bins. Following instructions is more difficult for him. Maybe I am just losing patience and don't explain myself properly.
The Dr told me to hide his car keys as we are still waiting for the Driving assessment forms to be dealt with and as he never completes a task or makes silly decisions it is best he does not drive, certainly not alone. After going through a pothole at night he carried on to his destination 30mins away when he should have come home. At 1.30am the AA brought him back, but not before he had temporarily lost his phone with credit card and driving licence.
It took a week for us to retrieve it, but local people helped find it and kept it safe for us, thanks to google app "where's my Phone" which was loaded on to his computer by our techy daughter. It makes the phone ring very loudly even when on silent.
Ok, well, in the meantime I put a hold on the bank card and bought a spare phone. Within minutes of opening it Hubby got the Sim card stuck in the phone so it had to go back to Samsung for repair!!
Car is repaired, phone is repaired, but although I need a rest Hubby isn't bad enough to go into respite yet.
Yes, I need some me time, but how??
Rant over.
If you have read this far then thank you and Happy Easter. Chocolate anyone? Or maybe a bunch of daffs or a walk in the sunshine?
I feel so tired emotionally and now after doing something silly to both knees, I can hardly stand up long enough to cook a stirfry.
I have MS and Osteoporosis and am frightened that I won't be able to cope much longer. Hubby seems OK, but he isn't. He leaves the hot tap running at night, leaves tools in the garden and simply cannot sort the rubbish into the correct bins. Following instructions is more difficult for him. Maybe I am just losing patience and don't explain myself properly.
The Dr told me to hide his car keys as we are still waiting for the Driving assessment forms to be dealt with and as he never completes a task or makes silly decisions it is best he does not drive, certainly not alone. After going through a pothole at night he carried on to his destination 30mins away when he should have come home. At 1.30am the AA brought him back, but not before he had temporarily lost his phone with credit card and driving licence.
It took a week for us to retrieve it, but local people helped find it and kept it safe for us, thanks to google app "where's my Phone" which was loaded on to his computer by our techy daughter. It makes the phone ring very loudly even when on silent.
Ok, well, in the meantime I put a hold on the bank card and bought a spare phone. Within minutes of opening it Hubby got the Sim card stuck in the phone so it had to go back to Samsung for repair!!
Car is repaired, phone is repaired, but although I need a rest Hubby isn't bad enough to go into respite yet.
Yes, I need some me time, but how??
Rant over.
If you have read this far then thank you and Happy Easter. Chocolate anyone? Or maybe a bunch of daffs or a walk in the sunshine?
its hard with your own health problems. i have a lot of pain but have managed by rationing what i do each day. what is essential and what can wait. happy easter and chocolate, yes please.
I think people who ‘pop in’ or call for a few hours can not possibly understand what it’s like caring for someone full time. I know my LO can change moods hour to hour and also seems to put on a ‘show’ for visitors. I too find it hard to leave the house alone and if i do it’s mainly to run errands to keep the household going. Thank you for your reply, it’s good to know we’re not alone in these circumstances however isolated we do feel.
Most defiantly, it’s more duties on the endless ones you’re ready doing. I love my family but they want a home cooked meal or grandma time it’s seems a lot when you’re so tired already. Oh to be relaxed & carefree and to enjoy these things more easily.
Good idea! My daughter and her two daughters - a six year old and a baby came up for the Easter weekend - OH, the PWD enjoyed them up to a point then felt he couldn't find his usual quiet place to sit and got a bit upset. So I'm doing the Granny thing, listening to the lovely endless chatter of the six year old and picking up and carrying the baby - then I have to wheedle Grandpa as he is feeling overwhelmed. Sigh. And I know, I know I haven't got anywhere near the difficulties lots of you guys have to deal with.
Yes @Thestruggleisreal PWD can certainly put on a show. People visiting have no idea. Even social workers or doctors don't get what it's like living with it 24/7
Really makes me cream inside when I here 'Make time for yourself' What a joke
Really makes me cream inside when I here 'Make time for yourself' What a joke
