MC for my mom soon. Anticipating the guilt, worry, fears, & overwhelm will increase.

Hope65

Haven't posted or read for a while. No excuses, but a lot of reasons. Honestly, life has just gotten really hard.

My mom ( early - mod dementia) will likely be moving to MC soon and i need to share my fears. (She is in rehab community now.) Ive been told that it's the right move, AND that the responsibilities, feelings of guilt,worry, anxiety, etc will probably not decrease. They may even increase bc I'll have to give up more control to other caregivers, still advocate, make/go to doc appts, etc. While it didnt completely surprise me to hear that it's for the best, it did hit me like a ton of bricks, and accepting it continues to be the hardest process with which i continue to struggle hard. Im 58 yo.

Im also told that i must get back to living at least some of my life -- and cant figure out how the hell I'll be able to do that. Scares the $&#@! out of me. My idolized dad died about a year ago, the rest of my family is MIA, and I'm also POA & HCP. Have estate atty & financial advisor. Do I know how to hire elder care atty? Nope. Decision- making is overwhelming. Not married & no kids to help support. Mom has always been shy & has only 1 good friend nearby who keeps in contact with her. Im in need of some non- virtual good folks for her & me and can't find 'em. In addition, i live out of state & see no other option than to move to where she is bc there is no one else -- im her person. I haven't been to my own apt in close to a year bc ive been living in hers since dad passed away. I love her so much and wouldn't have a moment's peace being 2 hours away. So much change happened & so much yet to come. Therapy helps, sometimes a 2-3 sessions per week, depending on my stress level. He's expensive, and fortunately good.

I attended my first ALZ webinar this morning and sobbed afterwards. Will my sense of humor come back? Will I ever have what resembles a "normal" life ( whatever that means) again? Will i be able to pull off the therapeutic fibbing & other interventions? (I've never been a good liar.) Anticipatory grief is so damn hard.

Ugh - now Im crying again & need to visit mom. Haven't seen her in 2 days & I miss her terribly.

I'll take all the virtual support I can get here & if a miracle of nearby live support comes out of this, I'll welcome that, too. Need concrete suggestions & guidance, as well, from all you experts & wonderfully caring people.

One question to start: how do i contain my sadness, deep feelings of loss, and anticipatory grief when Im with mom when im so overwhelmed?. I don't blame her at all and i know that my mood impacts hers -- don't want to break down bc she gets so sad seeing me struggle. I don't personalize either. I'm just overwhelmed & sad, feeling helpless to help her. ( Ironically & lovingly, she feels the same about me.)

Ahead of time, thank you all. I'm going to give this support space my best efforts.

❤️☹️

SEM_BOS

My moms in Mc. I’ve moved cross country to be near her and have some but not a lot of family help. I’ve pretty much given up my normal life too. Everything you said is perfectly relatable to me.

I’ve lost my sense of humor with my mom a few times, and just have to keep remembering that it’s not her fault and that me being in a good mood will help her. And me.

At the same time, I know that I get frustrated if I’m with her for too long and that helps nobody. So for that reason I’ve been keeping my visits shorter than I might, and occasionally taking a day off. I know the MC staff is watching out for her needs and basic care, and I just have to step away til tomorrow.

It took me time to learn to therapeutic fib and it’s still not always my best skill To tell you the truth, I think my best lessons in that when I told “the truth” about something and saw that it set off my moms anxiety, it made everyone’s life hard for an hour or a day or two.

I also saw other family caregivers at moms Mc who clearly didn’t “get it” and tried to learn from what I thought were their mistakes.

But that said, making friends with some of the other families at Mc was a helpful strategy. A few times I was able to ask one of them to just check on mom for me on a day I could not visit. One even went to visit her after losing their own LO.

I wish I had more advice. Keep reading these posts and you’ll see you’re not alone. I also recommend reading books on ALD for tips on communicating and dealing. (I do books on tape since I don’t really find time to read)

Wishing you the best for yourself and your mom

Quilting brings calm

Why don’t you move her to an MC in your area? Truthfully most people will not visit her even if she is in an MC close to them… so why not make it so you don’t have to give up your life too? Some people visit their loved one in an MC daily, others one, two or three times a week. Others can’t visit because it triggers agitation in their loved one. So although you will still be advocating etc, you will still be able to have a life if you stay in your own town.

Hope65

Good suggestion & one Ive heard before. Thank you for taking the time to share it. I wish i could, and it was a seriously considered option a while back. Long and too detailed (for here) story short, there were lots of unexpected & devastating setbacks that got in the way of transition. At this point, I've already been in her area for a year, living in my parents' apt. Not emotionally easy living in a place where the 2 people i love most in this world will never return. At this point, my moving will likely be easier than her moving. Will i resent it? Yup, already do ( also too long story for here), but it's not directed at her or my very missed dad. It's no one's fault, just a horribly unfair hand of cards dealt. When it will happen? No idea. If someone can come up with a way to split myself into 5, I just might have a chance.

Hope65

https://alzconnected.org/discussion/comment/176990#Comment_176990

I feel so validated by your response. Thank you SEM BOS. I have already re-read your words multiple times and am trying to imagine myself having made as much personal progress and accepting such an unfair reality. That you're doing it gives me a little bit of hope that I didn't have yesterday.

How are you coping with having " pretty much given up your normal life"? I feel like Ive already lost my identity and it scares the ∆√¢!& out of me, given lack of support system.

Please let's stay in touch, and thank you again.

GothicGremlin

About an elder law attorney - have you discussed this with your estate attorney? He/she may be able to give you a recommendation. If that fails, you could try your state bar association. They will probably be able to point you in a good direction.

My mom ( early - mod dementia) will likely be moving to MC soon and i need to share my fears. (She is in rehab community now.) Ive been told that it's the right move, AND that the responsibilities, feelings of guilt,worry, anxiety, etc will probably not decrease. They may even increase bc I'll have to give up more control to other caregivers, still advocate, make/go to doc appts, etc.

My sister has been in memory care now for almost two years. I was told the same things as you're being told, and for the most part, that's what it's like. The responsibilities are all still there, along with the worry, and the added bureaucracy. I haven't found that any of those things have increased, in my case, they've generally decreased. I hope you find that that's true for you as well. I'm happy with the MC facility that we chose. They're so good to my sister there. I'm sad that she's there, but I know that she's in the best possible place. She eats well, there's a pretty garden out in back, her room is sunny and nice. It also didn't hurt that a few months in she told me that she probably should have moved there earlier (!!!) Yeah, I was shocked.

Most of my family is MIA too, which is hard to take. Peggy has some amazing friends though who have stepped up. My core "Team Peggy" is myself, and her best friend from college and her best friend from kindergarten. Do you have anyone like that who you can reach out to?

When I'm with Peggy I use humor as best I can. If I can get her to laugh, it keeps her agitation down. It's not easy to do, especially for us caregivers who have to put on that brave face when we're there. They'll mirror us. If we show that we're sad, they're going to become sad. Peggy always liked Monty Python, so I'll remind her of Monty Python sketches - hey, no one expects the Spanish Inquisition, right?

Other things I do to keep sane - I write, listen to music (every day), and go to the gym often. All of those post-gym endorphins help carry me through the day.

I don't know about a normal life. I certainly don't have one, although I hope for one someday.

ButterflyWings

Hope - what a beautiful name or screenname. I am hoping for good outcomes for you, which are possible despite the overall bad hand we all are dealing with here. You have lots of helpful suggestions from others here who care. I hope some work for you.

Also, I am thinking of the "put on your oxygen mask first" guidance, and I know it is hard to put yourself on the list of things that seem to be piling up, but we caregivers really have to try and take care of ourselves too. It sounds like you are understandably grieving, with losing your dad only a year ago, perhaps he was really helping your mom more than realized, and her deficits now require immediate help. So you moved to take that on and are also losing her to dementia. That is a lot (the move alone, can be stressful).

You asked - "One question to start: how do i contain my sadness, deep feelings of loss, and anticipatory grief when Im with mom when im so overwhelmed?"

Can you see a Dr. and/or therapist for yourself too, to process all this? It is definitely enough to depress anyone, we know. Depression can feel heavy, sad, angry, overwhelmed, helpless, distraught, all of those emotions that can pile up on you. It may be worth looking into. Hopefully others will continue with additional guidance. Getting help for yourself doesn't remove the challenges, but can help you feel more able to survive them, and enables us to see our way clear to additional solutions - one at a time if needed. Sending you so much hope for the support you need to get through this. We truly understand.

Hope65

Good idea about the doctor. I see a therapist multiple times per week and a psychiatrist and 2x/month. Both are very aware of my situation, which in addition to the complex issues you picked up on, unfortunately include difficult family relationships.

The "brave face" thing remains so hard for me, even knowing that my mood will surely shape mom's. I just can't figure out yet how to contain &:it bothers me knowing she'll be heavily impacted.

Keep the feedback coming. Im open to it all.

Thank you kindly

CaliforniaGirl-1

I posted something a few days ago about how after all the guilt, pushing back and anxiety, MC has actually been a good for us and my LO. The hardest thing has been letting go of my ideas of what my LOs last years would/should be and accepting what my LO actually needs and can cope with. Also letting go of my need to control every thing around them so they could have exactly the experience I needed them to have. (very hard)

But...for the first time in years I am able to have a positive relationship based on love and conversations (same conversation every 30 seconds) and spending time together instead of constant worry, exhaustion and anxiety. In a sense its like I got my LO back (in a very neurologically diminished capacity) after years of lurching from crisis to crisis. My LO is quite elderly so I am happy to have this time with them. And yes, I know the disease will progress and their health could change in a way that plunges us back into crisis at any moment.

I am not saying it's either worry free or perfect because it definitely isn't and there are still plenty of issues to resolve and deal with. New one arose yesterday morning.

But my sibling and I sleep through the night without waiting for disaster. My LO is living an independentish life. One thing that helped a lot was finding a doctor who will come and see my LO at the MC and finding a MC with a RNs and a good wellness team.

It is so tough to let go of the guilt and we never really do. My LO's doctor said 2 things to me that I found helpful.

1- There are 2 people in this caregiving/LO relationship and focusing exclusively on the LO and ignoring the caregiver isn't good either of them.

2- Your LO's disease is going to take the course that it takes and you can't change that and they (the LO) are processing it in the best way they can.

I don't know if any of that helps with the guilt, I think we all have it.

As someone said about the oxygen masks, the best way you can take care of your LO is by taking care of yourself. For us, I know this is just a moment in time, a breather, and things will change and we will have to run around and try and adapt.