Question about dementia and emotions

[LMP]

My husband has been in memory care since April 21, 2022. He has been diagnosed with Parkinsonism and dementia/cerebral small vessel disease.
He usually thinks he is in a school dorm or in a military barracks. He usually likes his 2-room apartment - it has a south-facing bay window and is light and bright. He does ask about going "home" (his childhood home) but accepts my telling him it will be in the spring - or in a month.
My heart-breaking times are the times that, when I leave, he says, "I miss you when you're gone" - or "I'm lonely".
The care partners at our facility tell me those feelings are just in the moment - that he forgets them once I'm gone.
I'm having trouble accepting that...
But is that the case for others on this forum? Are emotions that fleeting?

 

[SeaSwallow]

Hello @LMP and welcome to the Dementia Support Forum. It must be so difficult for when your husband asks to come home or says that he is lonely but you are dealing with that issue in the right way, by saying that he will get home 'some day'. His two-room apartment sounds lovely - it must make it a bit easier for you that he is living somewhere that he likes.
The care partners are right, the longing to come home is brought on by your visit and your husband will forget them as soon as you leave, many of our member have the same experience with their loved ones who are in care homes.
Please keep posting on the forum, you will find lots of help and advice from our members.

 

[LMP]

Hello @LMP and welcome to the Dementia Support Forum. It must be so difficult for when your husband asks to come home or says that he is lonely but you are dealing with that issue in the right way, by saying that he will get home 'some day'. His two-room apartment sounds lovely - it must make it a bit easier for you that he is living somewhere that he likes.
The care partners are right, the longing to come home is brought on by your visit and your husband will forget them as soon as you leave, many of our member have the same experience with their loved ones who are in care homes.
Please keep posting on the forum, you will find lots of help and advice from our members.

Thank you. I needed that reassurance this morning.

 

[LMP]

Thank you. I needed that reassurance this morning.

The other piece of this puzzle is that, when I arrive each day, he says either, "Where have you been?" or "I've missed you! I'm so glad to see you!"... Is that also a "just in the moment"? I know his favorite chair in the common area is by the nurse's desk and elevator and that he'll ask about me. I have a message board in his apartment so the care partners know when I'm coming and can assure him... Again, is that just an assurance that someone he knows - and who knows him - will be there?

 

[SeaSwallow]

The other piece of this puzzle is that, when I arrive each day, he says either, "Where have you been?" or "I've missed you! I'm so glad to see you!"... Is that also a "just in the moment"? I know his favorite chair in the common area is by the nurse's desk and elevator and that he'll ask about me. I have a message board in his apartment so the care partners know when I'm coming and can assure him... Again, is that just an assurance that someone he knows - and who knows him - will be there?

Yes - if your husband's short term memory is bad he may have forgotten that you visited him the previous day and then he lets you know how pleased he is to see you.
It's good that you have a message board in his room as a reminder that you have not forgotten him and that you will be back again and that the care partners take the time to offer much needed reassurance to your husband,

 

[Hartwick]

Hi so sorry you are going through this. Every time we visit mum she says she's frightened don't leave me but forgets we have been after we have gone. She has recently had her medication review as literally no sleep at night thought we were getting somewhere then today was told literally awake all night don't know how she is surviving on no sleep but the staff are wonderful said change in medication will take a while just worried it maybe too much for the staff has anyone else experienced this.

 

[Crownlyn]

Hi hartwick I can’t offer any advice as I’m going through the same except my mum is at home with carers and I share the care. She’s either agitated or frightened, she keeps saying she’s frightened and wants to go home or says don’t leave me. She’s been given lorazepam for when she’s really agitated but how do you stop the fear. Like you I’m concerned that it’s too much for her lovely carers.
I hope someone comes along with some advice.
Take care x

 

[Hartwick]

Hi hartwick I can’t offer any advice as I’m going through the same except my mum is at home with carers and I share the care. She’s either agitated or frightened, she keeps saying she’s frightened and wants to go home or says don’t leave me. She’s been given lorazepam for when she’s really agitated but how do you stop the fear. Like you I’m concerned that it’s too much for her lovely carers.
I hope someone comes along with some advice.
Take care x

Hi Crownlyn
Thankyou for replying it helps knowing someone understands it just a living nightmare . Mums social care worker managed to get funding for 1 to 1 care at night in the home just to sit with mum who literally is not sleeping but the funding is only until today then it goes back to Panel. The specialist from the Dementia Crisis Team came on Friday and did a review and has increased the Trazodone and Mertazapine she thinks the anxiety is stopping her from sleeping at night. I only hope she can stay where she is . This saying Im frightened dont leave me has all started since they sent her home after 6 weeks after breaking her hip she wasnt home 24 hours it was deemed a unsafe failed discharge which she then spent a total of 8 weeks in two different respite homes before this permanent one was found which is lovely. Take care with and I hope your mum starts to settle x

 

[canary]

Many people with dementia develop a fear of being on their own. They need to be able to see someone literally every minute of their waking life in order to reassure them. Most people who develop this shadow their carer and follow them around all the time. Mum used to get up at night and go looking for people, so when she was at home she used to go out at night and when she was in her care home she used to get up at night and find the night carers, then during the day she stayed in the lounge.

It doesnt work if they are on their own for many hours during the day like your mum, @Crownlyn . Is your mum no longer mobile and able to find other people @Hartwick ?

 

[Hartwick]

Many people with dementia develop a fear of being on their own. They need to be able to see someone literally every minute of their waking life in order to reassure them. Most people who develop this shadow their carer and follow them around all the time. Mum used to get up at night and go looking for people, so when she was at home she used to go out at night and when she was in her care home she used to get up at night and find the night carers, then during the day she stayed in the lounge.

It doesnt work if they are on their own for many hours during the day like your mum, @Crownlyn . Is your mum no longer mobile and able to find other people @Hartwick ?

Hi Canary

Thankyou for replying. She is mobile with a frame since breaking her hip last year. She goes in the dining room for meals then back to her room. Literally having no sleep at night for weeks none of us know how she is surviving. The specialist is of the opinion that it is the anxiety that is causing her not to sleep at night so they have now increased her Trazodone and Mertazpine . She also now has a 1 to 1 nurse at night to sit with her but she was even unsettled over the weekend at night whilst holding the nurses hand. Hopefully if she can get some sleep we may see a improvement. She isnt aggressive and knows us all.

 

[harv5561]

HI I'm Andrew I have been diagnosed with white matter changes and mci but lot worst over the last months headache permanent nothing eases it. strage head blank mind so struggling. Such a strange feeling cannot take in thinking is appauling in a daze not knowing what to do from one minute to next.

 

[SeaSwallow]

HI I'm Andrew I have been diagnosed with white matter changes and mci but lot worst over the last months headache permanent nothing eases it. strage head blank mind so struggling. Such a strange feeling cannot take in thinking is appauling in a daze not knowing what to do from one minute to next.

Hello @harv5561 I am so sorry that you are having such a bad time with the headaches and being in a daze. I think that you should have a chat with your doctor to tell them how you are feeling and hopefully they will be able to help you.