I feel so alone

Philpsie

Registered User
Jan 6, 2016
35
Hi @Philpsie
How are you today? Hope you had a reasonable night, are your nights generally ok, my oh has some really bad ones, but we’ve had a few good ones recently, although I awoke to him peeing on bedroom carpet in the early hours, I normally wake and get out as soon as he moves as his mobility is so poor, but I must have gone off sound, that woke me up fully! Xxx
Hi @Philpsie
How are you today? Hope you had a reasonable night, are your nights generally ok, my oh has some really bad ones, but we’ve had a few good ones recently, although I awoke to him peeing on bedroom carpet in the early hours, I normally wake and get out as soon as he moves as his mobility is so poor, but I must have gone off sound, that woke me up fully! Xxx
Not too bad but I got M’s financial contribution verdict today and it’s not leaving me enough, I only have a part time job! As if I haven’t got enough on my plate!
I actually had a good night last night, I’m really sorry to hear your husband peed on the floor, does that happen regularly? My husband mostly has his accidents around or near the toilet. X
 

highland girl

Registered User
Jul 30, 2017
143
Yorkshire
Not too bad but I got M’s financial contribution verdict today and it’s not leaving me enough, I only have a part time job! As if I haven’t got enough on my plate!
I actually had a good night last night, I’m really sorry to hear your husband peed on the floor, does that happen regularly? My husband mostly has his accidents around or near the toilet. X
Not too bad but I got M’s financial contribution verdict today and it’s not leaving me enough, I only have a part time job! As if I haven’t got enough on my plate!
I actually had a good night last night, I’m really sorry to hear your husband peed on the floor, does that happen regularly? My husband mostly has his accidents around or near the toilet. X
Re peeing no, but he had had an accident at day centre yesterday, so keeping an eye on things re infection as he has enlarged prostrate.

I’m dreading financial contribution situation, I took redundancy 3 years ago with the intention of spending some time with D then going back to work after a year, but he deteriorated very quickly during that year so I couldn’t go back, he is 15 years older than me and I can’t get my pension for another 5 years. I worry what’s going to happen to me financially in the future. We shouldn’t have to worry about that when we’re caring for our family.

I’m glad you had a good night, when do they think your husband will go into respite do they have any idea, or has he already gone, not sure how it works? Take care Sxx
 

kindred

Registered User
Apr 8, 2018
2,340
I feel similarly - but I think it’s because they don’t understand. People say to me - he looks well / or he seems better today when no last time you saw him it was in a morning.I love my husband and he doesn’t like it when I’m not there but I have to have time off or I can’t cope. My OH wouldn’t have help so now we have ‘help’ with things round the house and I get 2 half days.I think it’s crazy when a person with dementia is able to refuse help - the help is for the CARER.
Now that is a very very interesting point, the help is for the carer. well of course it is, I wonder how we could ever steer it round that way ... Gxx
 

highland girl

Registered User
Jul 30, 2017
143
Yorkshire
Now that is a very very interesting point, the help is for the carer. well of course it is, I wonder how we could ever steer it round that way ... Gxx
So if the PWD won’t accept help we should be able to get help for the carer even if it’s just to take the pressure with housework/ gardening/shopping! Just a thought! Xx
 

Philpsie

Registered User
Jan 6, 2016
35
Re peeing no, but he had had an accident at day centre yesterday, so keeping an eye on things re infection as he has enlarged prostrate.

I’m dreading financial contribution situation, I took redundancy 3 years ago with the intention of spending some time with D then going back to work after a year, but he deteriorated very quickly during that year so I couldn’t go back, he is 15 years older than me and I can’t get my pension for another 5 years. I worry what’s going to happen to me financially in the future. We shouldn’t have to worry about that when we’re caring for our family.

I’m glad you had a good night, when do they think your husband will go into respite do they have any idea, or has he already gone, not sure how it works? Take care Sxx
My husbands 14 years older than me so very similar. I hoped to reduce my hours next year to be with him more but I can’t see that I’ll be able to do that now. It feels a very sad weekend but like many times before, we get used to a situation and get on with it, we haven’t really got any choice. It’s very sad when you realise your only real help comes to help you but in turn gives you a whole new set of anxieties. They’ve taken his finances into account but haven’t accounted for the concewwe’re only living off my part time wage!
 

highland girl

Registered User
Jul 30, 2017
143
Yorkshire
My husbands 14 years older than me so very similar. I hoped to reduce my hours next year to be with him more but I can’t see that I’ll be able to do that now. It feels a very sad weekend but like many times before, we get used to a situation and get on with it, we haven’t really got any choice. It’s very sad when you realise your only real help comes to help you but in turn gives you a whole new set of anxieties. They’ve taken his finances into account but haven’t accounted for the concewwe’re only living off my part time wage!
I understand where you’re coming from, if my oh went into care I would have no income at all. Although I had heard they can’t leave you with nothing to live on but who knows.Like you say we just have to deal with each situation as it arises and we do, but it has an impact on our health each time. Keep messaging it does help a bit. Sending hugs to you Sxx
 

Philpsie

Registered User
Jan 6, 2016
35
I understand where you’re coming from, if my oh went into care I would have no income at all. Although I had heard they can’t leave you with nothing to live on but who knows.Like you say we just have to deal with each situation as it arises and we do, but it has an impact on our health each time. Keep messaging it does help a bit. Sending hugs to you Sxx
 

highland girl

Registered User
Jul 30, 2017
143
Yorkshire
@Philpsie how are you, and how are things with your OH, did you
manage to see your grandchildren at all in the last few days. I’m hoping that you not posting means you are ok and not the opposite. S xxxx
 

Philpsie

Registered User
Jan 6, 2016
35
@Philpsie how are you, and how are things with your OH, did you
manage to see your grandchildren at all in the last few days. I’m hoping that you not posting means you are ok and not the opposite. S xxxx
I’m not brilliant, I haven’t seen my grandchildren and really miss them. M is going in for respite care But the whole process is really upsetting. I had a meltdown and couldn’t catch my breath so the doctor has signed me off for a week. Still waiting to hear from the home.
How are you, how are things at the mo? X
 

highland girl

Registered User
Jul 30, 2017
143
Yorkshire
I’m not brilliant, I haven’t seen my grandchildren and really miss them. M is going in for respite care But the whole process is really upsetting. I had a meltdown and couldn’t catch my breath so the doctor has signed me off for a week. Still waiting to hear from the home.
How are you, how are things at the mo? X
Did they give you any idea how long it would be.You’ll see your grandchildren soon but I understand how you feel. We’re ok, OH been to day centre today so I’ve been investigating homes for respite, it is awful. We just want them with us and everything to be normal but it’s not and we can’t! Yesterday I took him to local dementia cafe but he wouldn’t stay and I had to come home. I was telling my sister I wasn’t this restricted with my dad and he was strict, wonder if I’ll ever have a normal life again, or my own life again. You hang in there and keep posting. Thinking about you sending you hugs. I’m here if you need to rattle. Sxxx
 

Philpsie

Registered User
Jan 6, 2016
35
Did they give you any idea how long it would be.You’ll see your grandchildren soon but I understand how you feel. We’re ok, OH been to day centre today so I’ve been investigating homes for respite, it is awful. We just want them with us and everything to be normal but it’s not and we can’t! Yesterday I took him to local dementia cafe but he wouldn’t stay and I had to come home. I was telling my sister I wasn’t this restricted with my dad and he was strict, wonder if I’ll ever have a normal life again, or my own life again. You hang in there and keep posting. Thinking about you sending you hugs. I’m here if you need to rattle. Sxxx
I often wonder what it would be like to have a life of my own
Did they give you any idea how long it would be.You’ll see your grandchildren soon but I understand how you feel. We’re ok, OH been to day centre today so I’ve been investigating homes for respite, it is awful. We just want them with us and everything to be normal but it’s not and we can’t! Yesterday I took him to local dementia cafe but he wouldn’t stay and I had to come home. I was telling my sister I wasn’t this restricted with my dad and he was strict, wonder if I’ll ever have a normal life again, or my own life again. You hang in there and keep posting. Thinking about you sending you hugs. I’m here if you need to rattle. Sxxx
They’ve found a home, they’re sending someone out tomorrow at 9 to see if he’s suitable for that home. I’m really dreading it, I have no idea what will happen then, will they say pack a bag and bring him in. The very thought of it makes me feel sick to the stomach! He’s going in for 4 whole weeks! I’ve never spent that long away from him before!
 

imsoblue

Registered User
Feb 19, 2018
353
I often wonder what it would be like to have a life of my own

They’ve found a home, they’re sending someone out tomorrow at 9 to see if he’s suitable for that home. I’m really dreading it, I have no idea what will happen then, will they say pack a bag and bring him in. The very thought of it makes me feel sick to the stomach! He’s going in for 4 whole weeks! I’ve never spent that long away from him before!
A lot of us have been through this. It will wring your heart out. You will come through it though. We have. The grief is unbearable.
 

Lindy50

Registered User
Dec 11, 2013
5,239
Cotswolds
I often wonder what it would be like to have a life of my own

They’ve found a home, they’re sending someone out tomorrow at 9 to see if he’s suitable for that home. I’m really dreading it, I have no idea what will happen then, will they say pack a bag and bring him in. The very thought of it makes me feel sick to the stomach! He’s going in for 4 whole weeks! I’ve never spent that long away from him before!
Dear @Philpsie
This is so unbelievably hard. I feel you are doing the right thing, though - in fact, you have little option. It’s a really tough consequence of your husband’s dementia. It will be difficult and distressing, there’s no doubt about that, but hang on in there and I truly believe that, more quickly than you can imagine, you will know you have done the right thing x
Sending you a hug and all good wishes for tomorrow. Will be thinking if you.
Love
Lindy xx
 

kindred

Registered User
Apr 8, 2018
2,340
It is the worst day of my life so far!
Yes, hang in there sweetheart, there will be points of light, I promise you. I thought it was impossible to bear, but grief is normal, it honours the depth of our love. With you in spirit all the way. with love, Kindred.
 

highland girl

Registered User
Jul 30, 2017
143
Yorkshire
It is the worst day of my life so far!
@Philpsie, I’ve just seen your messages from last night, I’m thinking about you, try to be strong, I can’t say I’ve been through it as I haven’t as you know, but I know it’s going to be heart wrenching for you. I know 4 weeks seems such a long time but they need to get his meds sorted. Gather your family around you for support during this, rest yourself, ready for a new start when he comes home again. There are lots of people on here to support you too and lots who have been through what you are going through now. Lots of love S xx We’re here for you xx
 

Philpsie

Registered User
Jan 6, 2016
35
Hi @Philpsie

First time I’ve signed in for a while, just wanted to check how you’re doing. Thinking about you. S xx
That’s lovely, thank you for thinking of me! M went into a home last Wednesday for respite, I don’t like the place and he’s not happy there either. He threatened a Male carer with a butter knife . I can’t believe it, I know he can’t help it but where will it end? I don’t know him now so I don’t know what he’s capable of and How far he’d go. He’s not making it look good for himself, I worry for him. What makes it worse is after he went for two of the grandchildren the dementia people said he needs to go into respite, I assumed it was cos of his behaviour but the dementia nurse has now told me he needed to go in cos I was so upset! I hate the thought he’s in there cos of my fault! I’m so torn right now and feel guilty that he’s so unhappy
 

imsoblue

Registered User
Feb 19, 2018
353
That’s lovely, thank you for thinking of me! M went into a home last Wednesday for respite, I don’t like the place and he’s not happy there either. He threatened a Male carer with a butter knife . I can’t believe it, I know he can’t help it but where will it end? I don’t know him now so I don’t know what he’s capable of and How far he’d go. He’s not making it look good for himself, I worry for him. What makes it worse is after he went for two of the grandchildren the dementia people said he needs to go into respite, I assumed it was cos of his behaviour but the dementia nurse has now told me he needed to go in cos I was so upset! I hate the thought he’s in there cos of my fault! I’m so torn right now and feel guilty that he’s so unhappy
It's not your fault. He's in there because of his behavior (which understandably would make anyone upset) and his behavior is because of the disease dementia. Dementia is the reason he's in there and we all have to keep reminding each other it's no one's fault. It's a disease that is so terrible on more than just the one inflicted.