You are right @Silversally living with the PWD does seem to suck the life and joy out of the day. Like you, my OH sleeps a lot now, and this has made life a little easier. The down side is he can do nothing, he just sits and stares at the wall, or nods off in his bedroom, waiting for meals etc. He has just asked me 3 times when dinner is - it's only 3.30!! This morning he got up at 10 and asked me where his meal was - like he's in a hotel and expecting room service!! Not at all irritating!! The only positive to this is that I can see now that there will be an end to this - there is an incremental deterioration daily. I know it sounds harsh, but really this is an existence, not a life for him, or me.
Ten years on
- Thread starter Lawson58
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Yes, JaxG, existence is the word. I often feel cut off from the real world. How long has your OH been ill?
Thank you and oh goodness this is exactly the same for me!! I’m so fed up with being made to feel like I’m nagging!! We too have a dog which needs grooming daily!! I try to keep my tone even or lighthearted when I ask but obviously something else comes across 🤦♀️ yes thank goodness he works, but will sit in front of tv when not working- flicking the channels- not settling on one thing! You and others on here help with lifting of the oppression, thank you again x
You hit the nail squarely on the head there, with sucking the life and joy out of the day! When the OH is at work I feel somehow lighter! On his arrival home I feel like I’m waiting for the next thing to be missed, lost, or forgotten .
That's just it @Ssteph - as a full time carer, my life has become my OH's life, and my wants and needs have to be squeezed into the odd few minutes here and there that one isn't attending to the PWD. Sometimes that OK, but mostly not so.
Then it spreads to others. Out of sight, out of mind. As I can't join in with others, go to events, meet for coffee, etc, gradually, save for the few understanding and long standing friends, people forget you're there and don't phone or call round, and you realise how little you meant to them before.
that is just it, isn't it. people move on and deal with their own lives. Even grown up kids, albeit true that they all live in different locations not too close to us, I still feel sad/hurt that they do not even ask how we are. I know we are not in crisis in crisis situation they are better, in inquiring and even visiting). I understand that they are all busy with their lives but ...Oh well, on, on..it is my life, my situation and I will keep going on as best as I could.
That's the thing isn't it that even though our children may not be able to do anything it would be nice if they just made contact so we knew they were thinking of us and acknowledge that a little understanding of how life is for the parent doing the caring goes a long way. We have four children between us and it is the two that live nearest who seem not to care that much. It does hurt.
I don't always remember, but phone calls with children can, I've found, work both ways.
And if they don't phone me in a while, I assume their busy, and so, to show I'm thinking of them, I phone them. Sometimes miss them and leave a voicemail.
There are other friends on my permanent phone list to either get calls from, or to make calls to - just once in say every 6 weeks or so, including those abroad.
It helps me to, every so often, have an adult conversation.
And if they don't phone me in a while, I assume their busy, and so, to show I'm thinking of them, I phone them. Sometimes miss them and leave a voicemail.
There are other friends on my permanent phone list to either get calls from, or to make calls to - just once in say every 6 weeks or so, including those abroad.
It helps me to, every so often, have an adult conversation.
we call them, always. we initiate contact, not too often, mind, as I am mindful not to 'bother' them or sound needy. I come from Indonesia, and expect our children to at least inquire, or just say hallo. in my culture it is an obligation, but I accept it is different in every culture. thank goodness we have friends and neighbours who do inquire, and call for a chat
And those people who have moved on and who dealt with their lives, have all lived the ups and downs of living, the loved one who has cancer, the son who died in a car accident and maybe a great aunt with dementia. It’s how things are. I understand that you feel sad when children don’t call to see how you all are but do you ring them to see if all is ok? Communication is a two way street so you have a responsibility to make sure that you phone them too. The more you call each other the easier things get and if they get easier , then thIngs will happen more often.
i know I had to take things further, that I had to be proactive about my own life, even if it was only in little things.
We do, call them, of course. And we do know what is happening in our kids' lives too. Thankfully they are all fine. For that we are truly grateful
My OH was diagnosed three and a half years ago, but the symptoms started about 8 years ago. We had years of verbal aggression, some physical aggression, I'm just worn out. What about you - how long have you been living like this.
So sorry - that is a long time for your life to turned upside down. My OH was diagnosed 2 years ago but there were a few signs for about 2 years before. He is not at all aggressive but sometimes looks at me as if he hates me. Part of the problem is that he never did anything around the house, although a good handyman, and he was out a lot with his hobbies and working short term contracts after retirement. So now he is around the house all the time but doesn’t know how anything works or where things are kept - not that he would get it right anyway!
Oh yes - having them round the house ALL the time is absolute hell. Being a carer for the PWD is just so hard. If I go out, my husband watches out of the window, or sits on a chair facing the door waiting for me to come back. Even though I write notes to say where I am and when back, he calls me over and over again. This is a man who used to travel with work and never call so it is absolutely suffocating. He can do nothing now so everything is on me. It is exhausting.
I haven’t updated for a while but I think I needed a little big of good news to prod me into action again
Our lovely old dog had surgery to remove a lump that the vet was sure was a mast cell tumour and we have the results back. It was a low grade tumour, they got all the margins and the lymph nodes showed no evidence of cancer so no further treatment required apart for monitoring. Apparently if she has had one mast cell tumour, there a risk of her developing another.
Anyway, she’s doing very well and is responding well to the dementia medication and is more like her old self. We will enjoy our time with her while she is still having a nice life. The thing that struck me was that even vets have varying ideas about dementia. When I first brought up the possibility of dementia with a vet, she gave me a check list and if she didn’t tick the required number of boxes, then forget it. But the last vet listened to me and thought trying the medication worth a try. Hmmmm!
OH has had some pluses and minuses since starting on the new medication for his heart. The oedema has lessened a lot and his breathing is better but he walks ever so slowly now. He seems to be getting a bit more confused about things, regularly asking me if I am going to the gym (Thursdays) on any other day of the week.
He tends to mumble a lot and often I have to stop him and get him to start again so I can understand him. But he is OK when he is concentrating or talking to his bridge cronies. He is starting to get that frail look, a little gaunt in the face and the eyes looking a little vacant. I am aware that I have to remind him to put on fresh clothes and he always says he only had that shirt on one day.-
My daughter and son in law took us out for dinner and then we went on to a show The Best of British 60s and 70s Rock at our local Arts centre and had a really great night.
The pup, now 13 months old continues to bring me lots of laughs and love. He is a rock star at the dog park and gets along with dogs from little poodles to Irish Wolfhounds and visits all the humans for a pat and a cuddle.
I also had to have a stress ECG and the supervising doctor was one who had recently retired from general practice at my clinic which was nice. Anyway, she said I aced it so I walked out of the hospital feeling about ten feet tall.
While I can I get out everyday, to the dog park or a walk, then the usual groceries and round of appointments, though visits to the beach are about finished till next spring.
I hope that you are all looking forward to warmer weather and occasional sunshine if you get lucky!
Our lovely old dog had surgery to remove a lump that the vet was sure was a mast cell tumour and we have the results back. It was a low grade tumour, they got all the margins and the lymph nodes showed no evidence of cancer so no further treatment required apart for monitoring. Apparently if she has had one mast cell tumour, there a risk of her developing another.
Anyway, she’s doing very well and is responding well to the dementia medication and is more like her old self. We will enjoy our time with her while she is still having a nice life. The thing that struck me was that even vets have varying ideas about dementia. When I first brought up the possibility of dementia with a vet, she gave me a check list and if she didn’t tick the required number of boxes, then forget it. But the last vet listened to me and thought trying the medication worth a try. Hmmmm!
OH has had some pluses and minuses since starting on the new medication for his heart. The oedema has lessened a lot and his breathing is better but he walks ever so slowly now. He seems to be getting a bit more confused about things, regularly asking me if I am going to the gym (Thursdays) on any other day of the week.
He tends to mumble a lot and often I have to stop him and get him to start again so I can understand him. But he is OK when he is concentrating or talking to his bridge cronies. He is starting to get that frail look, a little gaunt in the face and the eyes looking a little vacant. I am aware that I have to remind him to put on fresh clothes and he always says he only had that shirt on one day.-
My daughter and son in law took us out for dinner and then we went on to a show The Best of British 60s and 70s Rock at our local Arts centre and had a really great night.
The pup, now 13 months old continues to bring me lots of laughs and love. He is a rock star at the dog park and gets along with dogs from little poodles to Irish Wolfhounds and visits all the humans for a pat and a cuddle.
I also had to have a stress ECG and the supervising doctor was one who had recently retired from general practice at my clinic which was nice. Anyway, she said I aced it so I walked out of the hospital feeling about ten feet tall.
While I can I get out everyday, to the dog park or a walk, then the usual groceries and round of appointments, though visits to the beach are about finished till next spring.
I hope that you are all looking forward to warmer weather and occasional sunshine if you get lucky!
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good news about the older dog. the young one looks so cute and friendly. a right charmer! mixed about your partner, a bit swings and roundabouts.
Hi @Lawson58
You said that with the new heart medication your OH now " walks ever so slowly ".
I have various friends taking various medications for heart failure, etc - beta blockers, inhibitors, blood thinners, etc - and they nearly all complain that they now feel much more tired (generally in the legs) than they used to. So maybe this is fairly general for this condition and these medications. However, if they are working and preventing worse, then s much the better.
You said that with the new heart medication your OH now " walks ever so slowly ".
I have various friends taking various medications for heart failure, etc - beta blockers, inhibitors, blood thinners, etc - and they nearly all complain that they now feel much more tired (generally in the legs) than they used to. So maybe this is fairly general for this condition and these medications. However, if they are working and preventing worse, then s much the better.
