Haven't posted in awhile - looking for encouragement

HeyDforDaughter

I haven't made the time to post in a while. Just busy-ing myself riding the ebbs and flows of Mom's dementia as her 24/7 caregiver and only child. Just when I think we have sailed into a good period (ie., sundowning not as severe, delusions decreased, sleeping through the night) then we hit an iceberg (ie., UTI, not recognizing me, mobility decreased). I know my mother won't get better but when her condition suddenly U-turns and she asks me "whose is my mother?" or "what is my home address?", I can't help but be discouraged. And this is coupled with husband drifting further apart from me as he busies himself with time with his best friend (now separated from his wife) and also with his female (married) boss (who tells him that "he" is the only one that she can talk to about business mixed in with personal topics). I feel out of those equations even more lately. Anyway, I guess I'm just looking for encouragement.

SusanB-dil

Hi HeyD - I know you have your hands full. Are you taking care of you? Getting some breaks from the ever-constant caregiving?  Do you think counseling might help for either yourself or your marriage? 

I know all of  'this' can sure take its toll on so many aspects of our lives. ~sigh~ ((hugs))

Arrowhead

I hope that some these phrases will give you encouragement 

“You are stronger than you realize.”

“Be gentle with yourself. You’re doing the best you can!”

“Whenever you find yourself doubting how far you can go, just remember how far you have come."

“Remember everything you have faced, all the battles you have won, and all the fears you have overcome.”

“Take everything one day at a time.”

“You never know how strong you are until being strong is the only choice you have.”

“Progress, not perfection.”

“No matter what happens, you are strong enough to handle it.”

“Give yourself some credit for all you’ve done so far.”

“Fall seven times, stand up eight.” — Japanese Proverb

“It always seems impossible, until it’s done.” — Nelson Mandela

“If you’re going through hell, keep going.” — Winston Churchill

“You must do the thing you think you cannot do.” — Eleanor Roosevelt

“It’s amazing what you can do when you have no choice.” - Me

HeyDforDaughter

Thank you for taking the time to read my post and for your responses.

Here is my reply:

Am I taking care of you (me)? Not really. Hope to do a better job at it. It's been baby steps. Would like to take bigger strides though.

Getting some breaks? Not quality breaks. I usually run out to appointments (self-care at least), errands  or meet ups with friends or co-workers (I work remotely) but feel I need to run back. No lag time. I need to find better quality/experienced sitters so I can feel more at ease at taking my time. Or just trust that who I have can do a good job. 

Counseling help? Probably heading in that direction. I'll keep you posted on any progress.

Encouragement quotes - thank you. It's great to have them all in one place when I need them. Very much appreciated,

Thank you again

jmlarue

I understand you're seeking encouragement, but you seemed to gloss over the serious red flags present in your relationship with your spouse. You may not be burned out caregiving for your mom, but it sounds like your spouse is. Have you considered placement for her so that you can work on repairing your marriage situation? It really does sound like her condition has declined to an extent that her care requirements are going to overtake every other part of your life. It can be a serious detriment to your mental and physical health. It already seems to be having bad effect on your personal relationship. It is not the natural order of things for your husband to feel he's playing second fiddle in your life. Your mom can be made comfortable, cared for and safe in an assisted living or skilled nursing facility. Your love and caring for your mom isn't diminished by choosing that option. It's important to remember that your mom's disease is progressive and terminal. I'm sure she would be horrified if she knew you were sacrificing your whole life, including your marriage, to take care of her.

I am so sorry to see you in such a difficult place.

EMC5287

Hello HeyD

My first visit here and post.  Like you I am a married caretaker of my Mom.  I left my fulltime remote job to have more time to care for her.  My Dad is the primary caretaker and I see this is killing him.  At the moment they both contracted COVID, Mom first very minor symptoms.  Dad positive as of yesterday and feeling awful.  I am really hoping the anti-viral meds give him some relief soon.

Our "plan" has been to wait until Mom no longer recognizes us and then find a facility to help with her care.  As we have with other family members that means we are at the facility daily checking on her as she did for her Mom.  There is a book recommended to us The 36 Hour Day I have been doing alot of research and from what I am seeing it might be less stressful for Mom to be in a smaller room with a set routine.  The fear and anxiety I see in her eyes everyday are just heartbreaking.  We have already had times where she does not recognize my Dad.

It sounds like your situation is way more progressed than ours.  You are amazing for coming so far.  Definitely sounds like you need to come up with a way to care for yourself and the other parts of your life.  I wish you the best in your journey.  Please contact a counselor so you have an outlet so you can get some one on one feedback from someone that will help you care for you.

quartlow2

I understand where you are coming from. I was willing and able to move in with my parents to care for them. My husband was, at first, too. But he and I soon realized that it was harder on our marriage than we imagined it would be. I felt like I couldn't leave my parents but my DH didn't feel the same purpose with them as I did; of course. We were fortunate enough to talk Dad into moving with Mom into a facility close to my sibling. I struggled with this because it bothered me when my Dad and his siblings decided their mother needed to be in a nursing home. I was in my twenties at the time. I told Dad "that isn't right! I won't do that to you." But, here we were. It was not easy for any of us to see our previously independent parents forced to let go of their home and lifestyle. Dad initially said, "you're asking us to completely change our lifestyle!" But then he realized that each of their kids were willing to sacrifice our lifestyle so that they didn't have to change theirs. So we helped them move and sell their home and adjust to a new lifestyle. I still came to spend 2-3 weeks with them regularly. Mom and Dad were safer there. We all got better sleep. It is not uncommon for the primary caregiver's health to fail before the PWD because we put our personal care on hold. In a care facility, though, there's a 24/7 staff who work shifts. So they get to sleep, relax and have other relationships daily.

I'm guessing your parents want you to be happy. They were probably happy to see you fall in love. If they knew this was hard on your marriage I'm guessing they wouldn't want that. It is not selfish to protect your marriage. 

mommyandme (m&m)

The way I see the caregivers that come to give me relief is:

They won’t always do it exactly right (shoot, neither do I) but mom is safe and not alone.  As long as they’re not thieves and are kind they’ll probably do fine.  Cameras help a bit too.  I’m much more relaxed, when I’m away from mom, than I used to be when I began as her primary caregiver.  Before I got more help in I could feel the depression depleting my mental AND physical health.  That is a scary feeling.  I hate that for anybody. 

You are doing a fabulous job for your mom but she’s nowhere if you break.  Whether you place  her in a facility or hire more help in, you must take time away from her life for your own.  I think your husband, in a muddy sort of way, is showing you that your marriage is troubled.  I think you might need to step back into his life soon.  I imagine you know this already.  

I’m so sorry that you are having these struggles.  We all have them. You are a really good person and deserve some relief and happiness. Please find peaceful time for you. 

May flowers

HeyD, I am so sorry you are going through all of this. It is hard when you feel you are losing yourself and your marriage. This happened to me when I was taking care of my mom decades ago.

I know now, two things have to be in place for me to take care of my FIL - one is I have to keep up with hobbies, my farm, my adult children, church, and other things that are meaningful to me and my mental/emotional well being. Two is that my husband and my relationship comes before caregiving.

Whenever caring for my FIL has encroached on either, we have acted - by getting the help we need - at one point it is a facility, now it is part time caregivers. At some point it will be full time caregivers or 24/7. I know my FIL (in his right mind) would never want to take over our lives. It helps that we are both committed to it, but if either weren’t 100% on board, we would have him placed (again).

HeyDforDaughter

Thank you all,

You're saying out loud what my mind has been thinking all along. I know I have to get my act together for myself, my marriage and outside care for my mom. Thank you for listening and for the advice. I will keep you posted.