Emotionally draining
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Well,, you can tell them how you are feeling but my guess is that you will not get the response that you want and need.
It is beyond difficult for someone to comprehend the physical and emotional toll involved in caregiving.
The changes you see are losses and losses mean grieving. We understand that and are here not only to share information with you but to also listen. We understand and are here 24/7.
-Judith
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Hi and welcome. I am sorry for your reason to be here but pleased you found this place. As a group, we get it.
IME, it's really hard to get other people who've not walked this road to understand the cost it extracts on us even if they wanted to. And quite frankly, those who remain at a distance either physically or emotionally do so, in part to protect themselves from witnessing the decline of a loved one or to avoid the guilt of not participating in their care.
Unless you can strong arm a sibling or niece/nephew to come stay with mom so you can take a break from care, they won't get it. My mom doesn't have dementia, but I am her main source of emotional and logistical support-- driving her to many doctor, hair, PT appointments as well as shopping and keeping her from being isolated. I have one niece who took her to Boston and Cape Ann for a week to see family. The entire week I was getting texts that said "OMG how do you do this?" because of the weight of being so responsible for another person.
It might be best to find your support elsewhere. Here is good. Some communities have support groups that meet IRL. My mom saw a talk therapist when she had to abandon her dream retirement to care for dad. I met once a month for lunch and to compare horror stories with a dear friend going through the same with her mom. And meds were a critical part too.
HB
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I will retire in March 2024 and hope to move closer to family all of whom are 5 hours away in Oklahoma. Mom manages well when I work I call 4 x daily and monitor with cameras. I guess I manage ok but sadly it's overwhelming at times, I know it's not about me but doing my best care for Mom.
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Moms currently on donepezil and memantine to slow progression. She bathes and dresses and maintain bedroom. No longer cooks . She takes it easy and loves her bagels with cream cheese and strawberry jelly. Limited on her food choices now as she doesn't like food much anymore. She loves fruits and yogurts. I cook dinner nightly and we enjoy church Saturday night and still eat out after mass. I know how fortunate we are but little changes and unknown is what keeps me frightened. I guess memory issues , mood swings and sleeping habits are the progression of the disease so far.
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Thank you Judith ,
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Hi there @tomsalz65
Glad you found this place - it's been a lifesaver for many of us, myself included.
I think many of us have experienced what you describe, that some relatives are distant and not involved. It's a tough one. I know for me, at first I was angry with them for not stepping up (I'm talking curb height stepping up, not even real stairs stepping up), but then I realized that some relatives are tapped out with their own stuff, some are fearful, and some just don't have the emotional capacity. I let it all go. Now when I see them and they ask how my sister is, I give the bare minimum and change the subject. I'd rather that at least some of them were involved, but that's clearly not going to happen, so moving on from it seems the best (for me anyway). As time goes on you'll find the strategy that works best for you.
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It's exhausting, Tom. Kudos to you for working and keeping an eye on her, mom looks happy and put together--great job! I will say that sometimes you have to ask family very specifically for help, even though we sometimes hope that family will offer. I think it can be one of those things that, because mom can still walk and talk, they assume it isn't challenging. I remember at first feeling like I shouldn't feel so frazzled because my mom could still do self-care & toileting. But keeping an eye on her from hour to hour and trying to support her without her feeling like I was managing her left me feeling so distracted.
I asked the family to read 'Understanding the Dementia Experience' so they might understand a bit better how Mom was processing information & making it easier for them to understand that her reality was very 'real' to her.
https://www.smashwords.com/books/view/210580
And I shared the Tam Cumming's handout as well, so they would know about what the progression might look like: https://tala.org/wp-content/uploads/2019/04/Tam-Cummings-LLC-Handouts.pdf
Do you have options for mom when you move closer to home for some respite for you? An aide, or adult daycare?
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That's the plan moved back to Oklahoma where my 2 brothers and 12 grandkids and 11 great grandkids live. All will be less than hour away. I would like assistance and will get
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Yes, it is emotionally draining. I hear you. I think it is really great that you recognize that, because I think some caregivers just keep on going without acknowledging the impacts that caregiving takes. Eventually, it can become more than just emotionally draining, but mentally draining, and then the physical aspects can surface too. I do not think many people talk about it, but those on this forum understand.
Your own health matters and your wellbeing matters. As far as getting siblings or others close to you on the same page, I am not sure that is possible. It seems either people 'get it' or they don't. You can also waste the precious energy you do have trying to get them all aligned. I only have one sibling and after six years, she still doesn't get it. I gave up, and just in giving up it was a relief because I focused my energy away from another draining aspect.
I suggest to try a few things and see what gives you respite and re-energizes you. This is a marathon, not a quick race, so it helps to focus on your own peace. Things like getting out in nature each day, even for a few minutes to go for a walk or enjoy a cup of coffee in silence helps. Participating in a favorite hobby, listening to music you enjoy, or reading a book on a favorite topic. Anything that mentally allows you to focus on something else can be refreshing. Also, take advantage of the community around you for help. There are senior centers with activities you may be able to drop your mom off to, or they offer meals you can order so you do not have to cook. These are just a few suggestions. We are here for you too any time you want to post.
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Thank you for words of encouragement, putting things in perspective helps I think I'm more critical of changes I see and that is what is fearful. Day to day trying to stay positive joyful for the good days.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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