Hello Difficult Morning!

[jigzy0728]

Good Morning.

I’m here and glad I found this group.
A place I can scream bc that’s exactly what I need to do. I’m divorced with no kids and no living siblings (my younger sister passed away 13 years ago).

My mommie who I loved beyond measure had a stroke (she kind of hid it when it happened not to worry me). But it’s left her on a walker and with some dementia to the extent where she can’t be alone.

I’ve had to move into her house to take care of her. I’m sleeping with my little dog on a sofa. I still have my condo but I haven’t slept there since. I also have a rather large job at a nonprofit that is very very understanding. But I still have to do the work.

But I feel trapped all the time with no help. I hired a caregiver who comes two days which allows me to go to work. But not much else. I have a small family. Two cousins who my mom has helped for years are only available on a “limited basis”. And Mom has no living siblings to help. It’s just me. I’m blessed
To have friends who help.

But this morning I was ready to scream.

I just feel like I’m isolated sometimes.

And I feel guilty bc I don’t want to be upset w my Mommie. I woke up and she is on 10. She’s more confused than usual, edgy and anxious. I got her online to watch church, but she’s being so demanding. She doesn’t mean it, and I know it’s just me.

I feel so guilty bc I want to get my nails done or hair washed, I want some of my life back - that just sounds horrible.

I had to go to the back room and pray.

She isn’t sleeping (even after a whole Benadryl) but honestly neither am I (I’m still on the couch). So that’s a large part of it.

Sorry for the stream of random thoughts. I just needed to vent.

I’m so glad I found this group where I can without judgment.

This isn’t the introduction I would’ve wanted but when you find a group like this, it’s what you need.

 

[Kevinl]

Hello and welcome, I guess you might be from the USA, no problem my mum/mom was American too.
Advise on help does vary by nation, and people post on here from all over the world, not a problem but national advise matters and by that I mean where she is not you.
Not asking for a state, city or zip code, but my guess is we're talking USA, correct me if I'm wrong. K

 

[SeaSwallow]

Hello @jigzy0728 and welcome to the Dementia Support Forum. You have a lot going on in your life at present. So it is no wonder that you feel trapped. This is a good place to have a rant and our members will understand how you feel. I am also assuming that you live in the US because of the terms that you use but dementia is the same the world over.
The Dementia Support Forum is UK based so I cannot suggest how you might get some help to look after your mom but I have attached a link to the US Alzheimer's Association. In the mean time please keep posting on here either to ask questions or just to have another rant.

Home | Alzheimer's Association

Alzheimer's Association national site – information on Alzheimer's disease and dementia symptoms, diagnosis, stages, treatment, care and support resources.

www.alz.org

 

[jigzy0728]

Thank you.

 

[Ellie2018]

Just by being in here, you will be surprised at how many of us feel the same way. We often see the image of very patient people with their loved ones but so many of us feel the frustration of life being narrowed by the day. It doesn’t mean we don’t care for them just that we also care for ourselves. Although sharing our frustrations gives no physical help, psychologically it helps to know you aren’t alone and that how you feel isn’t strange, weird, bad ……. Sending you best wishes across the miles.

 

[jigzy0728]

Thank you. Yes I’m in the US. I haven’t been able to find a forum like this in the US. Thank you for welcoming me.

 

[Kevinl]

Legislation is national, caring has no boarders, all here to help if we can. K

 

[maggie6445]

I'm sorry that you are in this situation. Caring is frustrating and isolating and I understand your need to be you, doing hair and nails. Please don't feel guilty, you need to keep your identity. Working ,caring and sleeping on a sofa must be hard. I'm sleep deprived at the moment and it makes me see life differently.
Please try to find something better to sleep on! It won't solve your problem but it might make things a little easier.
All I can say is I understand how you must be feeling. Best wishes to you

 

[canary]

Hello @jigzy0728

I think that you have become overwhelmed by the situation. Looking after someone with dementia is often much harder than we imagine. There is no need to feel guilty about wanting to have a bit of life for yourself - carers have needs too. Unfortunately, people with dementia can become extremely demanding. They lose empathy and all they can see are their own wants needs and comforts and cannot see that you have needs too. They want what they want and they want it now.

People with dementia also lose their sense of time and their normal body rhythms, so they often get night/day reversal or develop a fractured sleeping pattern where they nap for a couple of hours night and day. Sleeping tablets and sedatives often do not work, because the problem is not insomnia.

Im afraid that, being in UK, I dont know how you can get more help, or what the next step would be, but one thing Im sure of - what you are doing is unsustainable and you cannot go on like this without sleep
xxx

 

[jigzy0728]

You are all so helpful. Friends get tired of hearing you talk about this bc it comes across like you’re complaining about the woman who raised you bc you owe her so much. And I do,
This space has made me feel like I have support from people who understand and don’t judge you. One of my fav things to do lately is to rub her feet with lotion when she gets into bed. It relaxes my Mommie as she drifts off to sleep. I feel like I’m honoring the woman who sacrificed so much for me and my sister. On a nursing salary we took dance lessons, played musical
Instruments, including the piano she purchased, we received college prep classes. We both attended and graduated from college and had great careers. She suffered the worse thing a mother could ever suffer, the loss of a child (my sister was my absolute best friend) and was the major support for most of my family. So rubbing lotion on her feet at bedtime is the least I could do and it brings me joy.

But you make it ok for those times when I feel frustrated. I’m also deeply grieving the change, I miss my rock. She’s not the lady I once knew. I got thru the loss of my sister I believe bc of my mom. Now I feel like I’m losing parts of her. So thank you for being my safe space to express those feelings I can’t with someone else.

 

[jigzy0728]

Hello @jigzy0728

I think that you have become overwhelmed by the situation. Looking after someone with dementia is often much harder than we imagine. There is no need to feel guilty about wanting to have a bit of life for yourself - carers have needs too. Unfortunately, people with dementia can become extremely demanding. They lose empathy and all they can see are their own wants needs and comforts and cannot see that you have needs too. They want what they want and they want it now.

People with dementia also lose their sense of time and their normal body rhythms, so they often get night/day reversal or develop a fractured sleeping pattern where they nap for a couple of hours night and day. Sleeping tablets and sedatives often do not work, because the problem is not insomnia.

Im afraid that, being in UK, I dont know how you can get more help, or what the next step would be, but one thing Im sure of - what you are doing is unsustainable and you cannot go on like this without sleep
xxx

What you said about sedatives not working makes sense. I hadn’t thought about that. Yes I am working on getting a better sleeping situation for myself asap. But even that bit of info helped a lot. I have access to social resources here in the US. Oddly enough I work in public health. But not in this area. Sometimes the right info helps you ask her physicians the right questions and it also helps me look for the right resources.