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What can I do to feel I am helping my husband?

MaddieJ

Registered User
Sep 1, 2017
52
0
HI,

I haven't looked into this site for some time. Although I found it indispensable in the early days of our LBD journey and learn loads of useful information. I am in a different place now and this forum may again help.

My LO is now in a Care Home with Dementia Nursing Care due to medication. He was moved there after a long spell in a MH hospital. The Care Home was chosen during lockdown with viewing only from outside, reading CQC reports and recommendations by a lovely MH hospital Discharge Planning Person. I have not seen my LO since October. I carry the guilt of not being his carer, not giving him the one to one care he deserves. I carry the guilt of not bringing him back home to care for him. I cry at times for his company and his presence as if he has died. I then tell myself I have no control and am gentler to myself, but then I feel a wimp after I read about others who seemingly manage to be stronger and assertive and a better advocate than what I am. I cannot have him home because of his, untypical for him, yet unpredictable LBD caused aggressiveness.

I think it would be better if covid restrictions did not bar me from visiting him. I read the extract by Meg Wilkes and would love to do what she did when her LO was in a Care Home.

I would love to know what I can do to feel like I am helping him or know that he is not too anxious, upset, misunderstood, etc or what I can ask the staff when I contact to ask how he is. I have tried to get a zoom meeting up just to see him and his surroundings. This is still in the pipeline. He is unable to understand technology or phones and has little and mumbled speech so little communication. I don't want to put stress on the staff so ring alternative days rather than every day but as I get the same comments from them each time, it leads me to think 'what's the point?'

I would love to hear advice and would love to speak to someone who is in the same boat or a better boat?

Thank you
 

margherita

Registered User
May 30, 2017
2,915
0
Italy, Milan and Acqui Terme
Hi @MaddieJ ,
I am not in your boat ( I wish I were) because my husband is still at home with me, making my life unbearable and pestering me all day and sometimes all night.

I think you are doing what you are allowed to do under the current circumstances , which is not much, but it isn't your fault.
If you need more information about your husband or more contacts with him, I can't think of anything else to do,
but you could be a bit less worried if you got in touch with other people who have their PWD in the same care home . They might reassure you about your choice since you weren't allowed to see the place because of covid restrictions.
 

MaddieJ

Registered User
Sep 1, 2017
52
0
Hi @MaddieJ ,
I am not in your boat ( I wish I were) because my husband is still at home with me, making my life unbearable and pestering me all day and sometimes all night.

I think you are doing what you are allowed to do under the current circumstances , which is not much, but it isn't your fault.
If you need more information about your husband or more contacts with him, I can't think of anything else to do,
but you could be a bit less worried if you got in touch with other people who have their PWD in the same care home . They might reassure you about your choice since you weren't allowed to see the place because of covid restrictions.
Thanks for advice. I have tried to get in touch with others who have LOs in the Home but without success. I have made contact with someone who has their LO in a different home via Carers Trust. So nice to have contact with someone like that.
I am sorry you are suffering and have no answer. I would love my Lo here with me but know it wouldn't work. His behaviour was more than I or visiting Carers could cope with and was going worse so I can't think it will have improved. I do still love him but not the dementia that has destroyed him. It is mostly Covid restrictions that are causing me angst and the silly thoughts that I develop in my own head. My daughter has decided to write to the Home Manager expressing what our needs and hopes are for my husband and asking how his care is impacted by no contact and how do we know. We will see how that goes.

He has had a Covid infection and is just out of isolation but it wasn't known to me until on a call to see how he was I was told he was back on the ward. You can imagine I said where from. I knew he had his vaccination and had been tested positive afterwards during a routine test but not that he was ill with it.

I know how difficult it his caring for someone with dementia and salute all who are struggling. Thoughts to all. I still feel part of the journey. I'm sorry if I have upset anyone in respect of my worries which I know are little in comparison so I apologise.
 

lemonbalm

Registered User
May 21, 2018
1,234
0
Hello @MaddieJ

It is very hard having a loved one in a care home at present. I hope that your daughter's letter to the manager makes something happen to improve communications. It does seem very poor that you were not told your husband was ill.

The only thing I can suggest in the meantime is to send your husband cards or short letters and little gifts (which you may already be doing) to let him know you are thinking of him - and to remind yourself that you are still caring for him, just doing so from a distance.
 

margherita

Registered User
May 30, 2017
2,915
0
Italy, Milan and Acqui Terme
I know how difficult it his caring for someone with dementia and salute all who are struggling. Thoughts to all. I still feel part of the journey. I'm sorry if I have upset anyone in respect of my worries which I know are little in comparison so I apopologise.
Hi @MaddieJ ,
There's nothing to apologise for. We are all struggling, as you say, and your struggle is not smaller than mine or anyone else's. Thinking of you and wishing you strength, which we all need.
 

Zsazsa

Registered User
Jul 20, 2014
46
0
Somerset
Maddiej, I'm so sorry to hear that you haven't seen your husband for such a long time since he was transferred to a dementia care home...That makes it even harder to manage your feelings of guilt at not continuing to care for him at home. But I really hope that when the Guilt Monster calls you can knock it on the head and remind yourself of all the loving care you've given your husband, and that he really needs a secure environment now.

It seems like we're at the same stage too, as my husband went into a care home in December and was immediately isolated for two weeks because of Covid. I've only had one physical visit since then. Others on here will know of that difficult first visit, and the awful Skype session on Christmas Day, but with medication he is now more settled and the staff are able to facilitate telephone calls and Skype sessions with him.

Of course my DH can only answer "yes" or "no" so the "conversation" is totally one-sided and fairly short but - along with frequent little cards and gifts - he knows he's loved even if only in that moment. And it brings me relief and comfort. Do ask the care home to do something like this for you, and also, perhaps for them to stand by ready to shut down the calls if he gets upset or angry. I wish you well and hope you can organise a regular arrangement very soon.
Hugs and best wishes.
 

nestle

Registered User
Jul 22, 2016
80
0
Southwest but Yorkie by birth
Dear Maddie J, I write to my partner every week with words of comfort and reassurance. The carers read my letters.
I send him little presents such as chocolate or biscuits and unusual things like bubble wrap in case he like to pop it.
A week or two ago I sent pussy willow and catkins so he would know the season is changing.
I wish you well in your struggle.
 

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