MIL is in MC but I’m still a caregiver

forbarbara

MIL is in MC and I’m the responsible party. I’m feeling overwhelmed. Family has either disappeared or doesn’t want to hear about it. I’m watching her decline pretty rapidly and need to share my terror which is why I’m writing this post. But at the same time I feel guilty because so many others have been caring for LO in their homes for years. As difficult as my experience has been I don’t even know if I should think of myself as a caregiver.

ButterflyWings

forbarbara - I am sorry you are feeling such weight of this disease right now. It is a very heavy load for sure, and you are in the right place here. We get it. You are most definitely a caregiver. And a very caring one or you would not be posting these empathetic thoughts, and certainly not experiencing the range of emotions you are expressing right now.

We know this rollercoaster of feelings (including helplessness despite being "responsible" for someone with a progressive and unpredictable brain decline disease) all too well. Please try not to feel any guilt whatsoever. Though it is common that we caregivers do feel guilty, we learn to remember that we did not cause the dementia and can't cure it. And that caring at home is not ideal for every PWD or family.

I have heard from many here that caregiving at a distance, or having to manage the facility and day-to-day care team relationships etc. is just as tough -- just in a different way. Welcome to this group though I am sorry you and any of us need to be here. You will find many listening ears and common experiences to help lessen the overwhelming feelings at least some of the time. We learn to cope. Wishing you some moments of peace.

M1

Agree with butterfly wings, and offer you welcome also. Have to ask though, where is your husband in this? It's his mother, not clear to me why it should all fall on you. Gender politics? Hope and wish you get enough support. I wonder too if a personal counselor or therapist would help you cope if there's no other support available. You've found a good resource in this forum.

harshedbuzz

Hi and welcome @forbarbara

I am sorry for your need to be here, but you are in the right place. You are a caregiver. When a PWD goes into a facility for care it lessens the hands-on stuff but the feeling of responsibility for advocacy and well-being are unchanged. You may even feel more anxious having less control of over her daily life.

I am sorry you feel unsupported. You are always welcome to share or vent here. Some communities have IRL groups that meet, too. I did both. My mom did both plus a psychiatrist/talk therapist and a little something to get her anxiety/depression under control.

I'm sorry about the MIA family. My dad had a brother who lived in the same town as his MCF who visited once in the 7 weeks dad was a resident. I chose the MCF location specifically so he couldn't pull the "I didn't visit my brother as much as I would have liked because HB put him so far away"-- Uncle drove by on his way to the country club. I think he regretted his choice not to visit more often.

HB

forbarbara

Thank you so much for welcoming me to this online community. This is what has been missing in my journey with my LO. These discussions bring me tears, laughter, ideas and strategies — and relief.

mommyandme (m&m)

I just want to say…um…. YES… you are definitely a caregiver. I kept my mom home cause it worked for us, but I believe the responsibilities are no less for those with a LO in a facility. The emotional drain is the same, the second guessing, the exhaustion, the worries.

Im sorry you’re not supported by her community.

GothicGremlin

Welcome @forbarbara . I'll just chime in as well - you're most definitely a caregiver. No question.

I'm in a similar situation as you are - I'm the responsible party, and my sister is in memory care. Close family are mostly MIA. I realized early on that not only could I not take care of Peggy 24/7 in my home (I work, it would drive me crazy - so many reasons), and that in many ways, memory care would be best for her.

It wasn't an easy decision, but in our case, I think it's the right one. Peggy gets a lot of attention there, and most importantly, there are multiple caregivers there who take care of all of her daily living needs and who seem to genuinely care about her. I visit often - as her sister, not as her personal caregiver. This means the general dynamics of our relationship haven't really changed, and I'm grateful for that.

One of the things I did once Peggy moved to memory care is I reached out to a few of her better friends. I now have two of them who have been with me and Peggy since 2021, when she moved there. They're both angels and I'm grateful for them every day. We coordinate visits, treats -- the "extras". I'm bringing this up because close family may fail you (for whatever their reasons are), but there are people out there who may not, and who may pleasantly surprise you.

I'll also echo what others have said - this forum is a great place to get ideas and support.

forbarbara

Gothic Gremlin, you are so right about the “family” that our LO has. I just found out this week that a group of her neighbors has been visiting my MIL at her MCF. How wonderful is that?

GothicGremlin

I am so happy to hear that! It's great news.

I had my own good news today as well. One of Peggy's friends called me today with help/advice from the woman who runs the Alzheimer's support group that she goes to. We talked for almost two hours. Also today, Peggy's friend M arranged a facetime call for Peggy and her ex-boss who she was always close to.

Those good folks are out there - just like your MIL's neighbors.

forbarbara

i knew this day would come but I still wasn’t ready. Yesterday she said “I have a daughter in law who looks just like you”. She was so happy when I told her that’s who I was. Does she miss us as much as we miss her? How much is in the heart, how much in the brain?

jfkoc

Barbara......I have come to the conclusion that we do what we do because of who we are. You are a caregiver and a beloved one at that.

Please do not feel any guilt because your MIL is not living with you. It sounds like she is exactly where she needs to be. You are still taking care of her.

Judith

Hope65

Oh boy -- this resonates with me more than i can describe -- the terror, fear, overwhelm, & guilt. Im the responsible party, too ( Power of Atty & Health Care Proxy). My mom will be moving to MC soon and Im already sick over it. Let's send each other positivity, peace, and strength, ok? Mine is already on its way.

forbarbara

Hope 65, this forum is so important - it gives me a place to express that rollercoaster of emotions. Thanks for your positive thoughts and I know everyone who reads your post will send some your way.

one thing I’m learning is that it just never stops. You’d think we’d all get used to it after awhile but it’s pretty clear after reading different discussions here that we really do need each other.

Hope65

It's the "it just never stops" that scares me the most. As the only caregiver, with no family of my own to help support me support Mom, how to sustain myself is becoming more of a concern. I will do my best to stay connected here, while doing the best i can with other major responsibilities, stick with therapy, and hope for some goodness to emerge. Thank you for taking the time to respond with encouragement & hope 🔆😕🤞

forbarbara

Hope65,

The MC may have a support group for caregivers that meets in person or by zoom.

also I’ve come to believe that family is where you find it. Most of mine is MIA. But there are a few friends of my MIL who I’m going to claim as family. I hope you find some new family too.

Hope65

Me, too. Thank you!