Feeling so alone

[Pusskins]

I know the feeling of loneliness will have been discussed before, so forgive me if I should just go and consult those earlier posts, but I'd like to start afresh.
It's not quite 3 months since MH was placed into care. Before the dementia, we had a close relationship so with us now being apart I just feel so bereft, torn apart and lonely. I have no family close by and only casual acquaintances who are not into phoning me or dropping in. Perhaps it's just a time thing, but I miss him terribly. Even when he was here with his dementia, he was still company. I still can't believe how rapidly he went downhill, from being almost normal 18 months ago, to now being in care. When my arm was in plaster, I was only able to visit once a week and once I was out of plaster and was able to drive myself once again, I've visited him more frequently. However, talking to the RN yesterday, I commented that MH hadn't eaten much of his midday meal while I was there. Her reply was that when I'm not there, he cleans his plate up and that I was a distraction to him. I think she meant that kindly, but I've now decided to only visit once a week. He recognises me, but it's clear he doesn't think about or ask about me when I'm not there, he's settled, so perhaps it would be better for both of us if I only went once a week. It is a long drive and to be honest, I'm feeling pretty tired today after travelling twice this week. The home is a 90 minute drive from here and then there is the return trip.
I know he is in the best place and has improved in many ways since being there, so why can't I just accept the status quo and get on with life?
I feel so stupid posting this, but what else can I do on a lonely Saturday night as I sit here crying my eyes out?

 

[jennifer1967]

not sure this will help as my husband is not in a care home at the moment but i can understand to a lesser degree that its hard when once you were as a couple and now even as you are still a couple, you are not if that makes sense. i think the carer could have been a bit more sensitive, i wouldnt have liked being called a distraction either. it will be that my right arm is missing and the purpose has gone and left in nomansland not knowing which way to turn and shock, its been this quick. we have a very close marriage and i dread when we get to that point. dont they call it anticipatory grief i think. just wanted to reply, others will be better able to give you advice.

 

[Grannie G]

Hello @Pusskins

Having a partner in a care home leaves us with a massive hole in our lives which is impossible to fill. We go from being on call 24/7 with responsibilty for another person to having 24/7 to ourselves with nothing to do and nowhere to go.

My husband was only a short bus ride away so I could visit when I wished. A 90 minute drive is a long way to go if arriving only causes further upset.

When I visited my husband I went in the morning and as soon as lunch was ready made it my excuse to leave. This way he ate his food and was not distracted by the fact I wasn`t eating with him.

It`s early days for you and you will get used to it in time even if you continue to feel so alone.

I don`t think anyone can make it better for you but perhaps when the better weather comes you will be able to visit more often and get out and about yourself.

 

[Pusskins]

not sure this will help as my husband is not in a care home at the moment but i can understand to a lesser degree that its hard when once you were as a couple and now even as you are still a couple, you are not if that makes sense. i think the carer could have been a bit more sensitive, i wouldnt have liked being called a distraction either. it will be that my right arm is missing and the purpose has gone and left in nomansland not knowing which way to turn and shock, its been this quick. we have a very close marriage and i dread when we get to that point. dont they call it anticipatory grief i think. just wanted to reply, others will be better able to give you advice.

Thank you @jennifer1967 The fact that you replied was a help.

 

[Pusskins]

Hello @Pusskins

Having a partner in a care home leaves us with a massive hole in our lives which is impossible to fill. We go from being on call 24/7 with responsibilty for another person to having 24/7 to ourselves with nothing to do and nowhere to go.

My husband was only a short bus ride away so I could visit when I wished. A 90 minute drive is a long way to go if arriving only causes further upset.

When I visited my husband I went in the morning and as soon as lunch was ready made it my excuse to leave. This way he ate his food and was not distracted by the fact I wasn`t eating with him.

It`s early days for you and you will get used to it in time even if you continue to feel so alone.

I don`t think anyone can make it better for you but perhaps when the better weather comes you will be able to visit more often and get out and about yourself.

Thank you @Grannie G Because his care home is so far away, I make a point of staying for at least 3 hours. It seems silly to go that far for just a short visit. They always provide me with a meal also. MH seems glad to see me and strangely, although most of what he says is gibberish, he can still tell me he loves me. I wish I could have put him somewhere closer to home, but my thoughts were for his well being first rather than my convenience. MH is nearly 82 and I could well have been widowed by now and I have to accept that as life advances, the chances of being left alone increases. I don't think I ever thought it would be this way though as MH has always had excellent health and I'm the one with chronic conditions. We are somehow never prepared, are we?

 

[Weasell]

Hi Pusskins !
I had wondered where you were?
I still remember your husbands cellulitis ! My brain drives me mad, it remembers stuff like that and anything that I want to remember, or is useful to me it discards instantly ( no offence to your husbands legs intended) !!!!

The problem with the caring role is the damage it inflicts on our lives. You stop going out because it’s too much aggro ! ( Getting a Covid jab is the best outing some of us have had for months ) many give up working.
One thing I have loved about lockdown is not having to hear about others fabulous holiday to the Galapagos Islands. I don’t begrudge anyone anything , but it makes you very aware that your news ( I had an exciting trip to Lidl ) isn’t quite hacking it.

Many people in your position have to create themselves a new life from ground zero and it’s hard, it’s really hard.
I don’t have any useful advice ! One trick that I fall back on far more these days is asking so many questions of others, that when we have parted they don’t even realise I had absolutely nothing to talk about at all.

 

[Pusskins]

Hi Pusskins !
I had wondered where you were?
I still remember your husbands cellulitis ! My brain drives me mad, it remembers stuff like that and anything that I want to remember, or is useful to me it discards instantly ( no offence to your husbands legs intended) !!!!

The problem with the caring role is the damage it inflicts on our lives. You stop going out because it’s too much aggro ! ( Getting a Covid jab is the best outing some of us have had for months ) many give up working.
One thing I have loved about lockdown is not having to hear about others fabulous holiday to the Galapagos Islands. I don’t begrudge anyone anything , but it makes you very aware that your news ( I had an exciting trip to Lidl ) isn’t quite hacking it.

Many people in your position have to create themselves a new life from ground zero and it’s hard, it’s really hard.
I don’t have any useful advice ! One trick that I fall back on far more these days is asking so many questions of others, that when we have parted they don’t even realise I had absolutely nothing to talk about at all.

Hello @Weasell ! The cellulitis is one reason why he's better off where he is. They have managed to get MH to sleep in his bed and his legs have come down so he no longer gets cellulitis. He has lost around 14 kg in weight which was all the extra fluid he was carrying! Yes, I have to establish some kind of a life for myself and am looking forward to this next week when craft groups etc will be re-opening here in NZ now that all the holidays are over.

 

[PetAng59]

Hi
I totally get the loneliness, my husband is still with me, we were very close but now it's like he resents everything I say and only takes any notice of our daughter who I might add has been very helpful especially during lockdown.
When he was diagnosed 18 months ago I promised him that I would always take care of him and would not allow him to go into a care home. Sometimes he makes me feel so unwanted that I think I might be better off if he was in one. Although I wouldnt allow it and would fight as hard as poss to make sure I kept my promise to him. I keep having to remind myself that it isnt him it's this awful disease. He is about stage 5 of the 7 stages so I have a lot more heartache to come I guess. It's just good to be able to unload.

 

[jennifer1967]

ive said the same thing, he was diagnosed about a year ago but has had it 2 yrs. the only time in my ideal world would be if he was a danger to himself or others then i would have to consider it. early on he made one nasty comment that if i moved him into a CH i woulde have to move which i would have to. hes my best friend and we had this conversation when we got married as there is a 19yr age gap and very possible i would become his carer when he got older so my eyes were wide open but it can be lonely and solitary but i cant change it

 

[PetAng59]

My husband is suffering really badly with his feet and has been for over a year, he is being treated for peripheral neuropathy but they're not sure it is that and the meds don't seem to help, he is now waiting to be referred back to neurology to see if they can treat him. He is in so much pain and discomfort that he is struggling to live with it. He spends half the day in bed with the electric blanket on as he says it is the only thing that helps and anything I suggest he just gets mad and tells me it doesn't help. I'm sure he thinks it's my fault that hes in pain!

 

[jennifer1967]

does he have diabetes? my feet have very little sensation in them due to diabetes and the circulation. if they get hot, they itch

 

[PetAng59]

They say not, he does have feeling in them, he says it feels like ball bearings going round his feet. He stands up most of the time as he says it feels a bit better when he stands, when he does sit down he holds his feet up and using a poof doesn't help. The docs have mentioned that it might be his brain signals sending wrong messages to his feet, I don't even know how they could do anything about that. He goes for regular walks as he says they don't hurt when he walks but then when he stops it is worse. I don't know how much longer he will be able to go on if they cant help him, hes always mentioning throwing himself in the lake and I am half expecting him not coming home one day.

 

[jennifer1967]

i have a trapped sciatic nerve which is in the back and right down my right leg. that feels like electric shocks going up and down my leg and its worse if its cold among other things and it does get me very down as well with the back pain as well. i have a morphine patch for mine as they did a nerve block injection and it didnt work so basically i have to live with it to all intents and purposes.

 

[PetAng59]

Fortunately because of his alzheimers, they are limited as to what they can give him. We will see what happens with the neurologist.

 

[jenniferjean]

l've moved my answer here to a new post.

 

[PetAng59]

Hi Jennifer where have you moved it to?

 

[jenniferjean]

Hi Jennifer where have you moved it to?

I started a new post entitled "I'm worried that I'm wrong about keeping my husband at home".

 

[Chris M.]

I know the feeling of loneliness will have been discussed before, so forgive me if I should just go and consult those earlier posts, but I'd like to start afresh.
It's not quite 3 months since MH was placed into care. Before the dementia, we had a close relationship so with us now being apart I just feel so bereft, torn apart and lonely. I have no family close by and only casual acquaintances who are not into phoning me or dropping in. Perhaps it's just a time thing, but I miss him terribly. Even when he was here with his dementia, he was still company. I still can't believe how rapidly he went downhill, from being almost normal 18 months ago, to now being in care. When my arm was in plaster, I was only able to visit once a week and once I was out of plaster and was able to drive myself once again, I've visited him more frequently. However, talking to the RN yesterday, I commented that MH hadn't eaten much of his midday meal while I was there. Her reply was that when I'm not there, he cleans his plate up and that I was a distraction to him. I think she meant that kindly, but I've now decided to only visit once a week. He recognises me, but it's clear he doesn't think about or ask about me when I'm not there, he's settled, so perhaps it would be better for both of us if I only went once a week. It is a long drive and to be honest, I'm feeling pretty tired today after travelling twice this week. The home is a 90 minute drive from here and then there is the return trip.
I know he is in the best place and has improved in many ways since being there, so why can't I just accept the status quo and get on with life?
I feel so stupid posting this, but what else can I do on a lonely Saturday night as I sit here crying my eyes out?

I know exactly how you feel because it is a sadness like no other and only truly comprehended by fellow travellers.
I am barely out of the blocks with MW and feel that I am on a permanent diet of Cortisol and Adrenalin seasoned with grief.
The courage and example of others in the same boat on this blog though suggests that we will eventually find depths of coping within ourselves that we did not know existed.

 

[nita]

My mother had both Alzheimer's and chronic pain syndrome. At least that's how they diagnosed it - she had it mainly in her arms and said it was like being stabbed all the time. It got worse after she had surgery for carpal tunnel syndrome.

She could just about bear it before she got dementia and as that progressed, she would cry out in the night. It was very difficult to treat - she had high Fentanyl patches which didn't help but it seemed to help when the Pain management team put her on pregabalin.

Whether it was the stage of her dementia that she became calmer or if it really as the drug I am not sure but it did seem to coincide after about 2 months of treatment. Before that I had to have night carers for 3 nights a week as I couldn't keep doing the night watch. It was so hard to soothe her, I'm afraid at times I became impatient with the lack of sleep.

Could your husband see a Pain Management specialist? I don't think all hospitals have them. Mum tried lots of things before we seemed to hit on the solution (by the way, it wasn't a complete solution, as she still felt the pain). She tried a TENS machine but didn't find it any use. She also had gabapentin at one time but I don't think she pursued that long enough. They wanted her to do something like CBT but she was adamant that wouldn't help (that was pre-dementia, certainly wouldn't be used afterwards anyway).

Pain does seem to be a pretty intractable problem which is very difficult to live with. I hope your husband can get some help. Is there such a thing as heated boots? I know there are gloves that can warm your hands.

 

[PetAng59]

Hi all sorry I have just seen some of these comments. Thank you all for your comments. However he has tried pregabalin but it didn't help, he is now on gabapentin 900mg 3 times daily, it is helping a little but i dont know how long for. He is also taking codeine to help with the pain.