Living in Caregiver Bubble

Wilted Daughter

The role of full-time, solo caregiver is taxing. As mom ages and cognitive functioning declines I feel that I am being pulled deeper into the bubble. Daily interactions with doctors, visiting home health professionals, insurance companies, and pharmacies is like taking your work home with you (I'm living at my job). 

Hard to get out, meet new people because caregiving and her appts take up all my time and my personality is changing. After incident in August (she fainted, hit her head, taken to ER, needed pacemaker, stayed in hospital/short-term care for 30 days), the overall decline is apparent. So I watch feeling hopeless to delay or stop the inevitable. 

DrinaJGB

You have to pace yourself and take it a day at a time. This disease will test you to your limits. It helps to remind oneself that it is only temporary. Good luck.

AlyJo

I'm in the same place.  Losing contact with the outside world.  People offer to take me out to dinner or coffee but no one offers to stay with him so I can get away. I left the house for 2 hrs the other day and came home to him trying to cook.  Had noodles in a pan with little to no water and foil pkg in the pan trying to stir and cook it.  Another time he turned the stove on and then decided to use the microwave and did not turn the stove off.  

It is just frustrating and lonely.  A bubble is a good way to describe this version of living.

M1

I’m there too, though it’s my partner not a parent. We just had an old friend out for lunch today and it was great, but he left half an hour ago and it’s been repetitive questions ever since. We’re not quite at the point of needing ADL help and we’re in a rural, unvaccinated area that makes all contacts risky. It’s just me and the animals. I can take it temporarily, but not knowing the duration makes it very hard.

Mobile AL

I know the lonely feeling. Getting thru the day can be very stressful when you don't have someone close by who really understands what the day of a caregiver involves. 

Today I had a doctor appointment and my brother in law was coming over to sit with daddy. Last night I reminded him and there was no problem he said. 

Well I had to cancel the appointment when he didn't show up. When he did show up half an hour after my appoint time he said he got a late start (He lives next door on my property.) He was also drunk. 

I'm normally a very calm and understanding person. I rarely get mad (or hold it in when I do); always trying to keep my Pollyanna hat on straight. The doctor appointment was to have my antidepressant medicine refilled; I have been without it for over 3 weeks. It was unfortunate for my BIL to have shown up when he finally did. 

Finding someone you trust to sit in for you is almost impossible sometimes. My BIL was a paramedic for several years so I felt comfortable with him sitting in for me. Now trying to find someone else is going to be tough. 

DrinaJGB

It is a lonely place to be for sure. We also live in an area of low vaccinations, so I am limited to grocery store runs and doctor's appointments. Even though we are both fully vaccinated our son in law who is also fully vaccinated got a breakthrough infection that was serious and left him with a blood clot. That scared the crap out of me as he had no co-morbidities and is 39.

  SO-- we remain in the house mostly.

I try  very hard to find distractions when I am feeling stressed and frustrated. Gardening, dog walking, and music. Today I got involved making a homemade vegetable soup and that was fun. I used to really love cooking when it wasn't every single day---when we actually had a life and went out to eat weekly. Sadly, those days are gone as are so many other things. It does feel like a bubble.

 Sometimes it's hard not to become hopeless, but I always try to find a way to pull myself out of that pit.I wake up in the middle of the night sometimes feeling completely alone and wondering just how is it we have gotten here.I can't let myself slide down that slippery slope but at times I want to.

 What was it the poet said?

  We need to sit on the rim of the well of darkness, and fish for fallen light.

kmasenact

It may be time to put her in a home.  I know I'm a caregiver to ALZ residents, but I am a former family member of someone who had ALZ.  You can read about her in my bio.  We didn't put my grandmother (who had ALZ) into a home for 4 years after her diagnosis.  Eventually, it got to be too much.  My sister and I were both in school full-time, my Dad worked full-time, so it was just my Mom and it was getting to be a lot for her.  When we put my grandmother into a nursing home where she was cared for by caregivers who had more skills than we did, it was the best decision we ever made.  My parent's stress went down drastically and we could go back to being just family members for my grandmother as opposed to holding dual roles as her caregiver.

edengill

I don't know how to deal with the sadness and sorrow between my grandmother and me... I love her so much. It tortured her,  so did I.

edengill

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Suzzin

I know I am lucky, my parents are in AL and my husband is very supportive, but I feel like my whole mental space is filled with caring/worrying for my parents. Our son just left for college and people ask what I will do with all my "free time", but I don't feel like I have much even though my parents don't live with us. It just fills every space in my life.

Mlewis501

I too feel like the Wilted Daughter.  This is so hard!  I thought once I put mom in memory care, I might would feel like I have a life again.  However, between going and seeing my mom, talking to her nurses, dealing with my dad, who is of sound mind but has a failing body, and trying to take care of my family.... I just don't know how much more I can take.  Yet, everyday, I get up and try again.  There is the guilt we all struggle with, the tiredness from worry and not sleeping, the exhaustion from trying to take care of everyone and everything.  My brother passed away a year ago so I am now an only child trying to deal with all this.  Someone told me the other day to remember that "this is temporary."  Well, after dealing with it for years, I just don't know about the statement anymore.  Until you walk this walk, people just don't know.  Sending prayers for all who do walk this walk.

DrinaJGB

Approaching year #12- and I still have to tell myself it is only temporary. It's the one thing that keeps me going. Otherwise, I just might give up. But giving up is really not in my DNA.

It's a hard and lonely road. That's the one thing I know for sure.

BassetHoundAnn

Mlewis501 wrote:

I too feel like the Wilted Daughter.  This is so hard!  I thought once I put mom in memory care, I might would feel like I have a life again.  However, between going and seeing my mom, talking to her nurses, dealing with my dad, who is of sound mind but has a failing body, and trying to take care of my family.... I just don't know how much more I can take.  Yet, everyday, I get up and try again.  There is the guilt we all struggle with, the tiredness from worry and not sleeping, the exhaustion from trying to take care of everyone and everything.  My brother passed away a year ago so I am now an only child trying to deal with all this.  Someone told me the other day to remember that "this is temporary."  Well, after dealing with it for years, I just don't know about the statement anymore.  Until you walk this walk, people just don't know.  Sending prayers for all who do walk this walk.

This is so perfectly stated. It's exactly how I feel. I thought (hoped) that once my mom got into memory care my life would start to assume some semblance of normality. But that has not been the case. I start every day with a to-do list of phone calls to make, bills to pay, e-mails to answer, forms to fill out. Omigosh, the forms! The freaking forms! There's a new one every day! The paperwork never ends! It's as if mom is a business I'm struggling to run by myself. I also respond to calls and texts from her old friends and relatives. And there's a perpetual shopping list of things she needs. And the almost-daily visits to mom and the talks with nurses and aids because you know they're not doing her laundry, they're not escorting her to meals, they're not following the care plan, etc. It's still all so overwhelming. And exhausting. Some days I also say...I just don't know how much more I can take. 

edengill

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Wilted Daughter

I hope it helps to know/hear that there are others who are in a "bubble" (it does for me). I guess all we can do is to keep fighting the good fight...you know 'solider on' as they say. 

I try to redirect my thoughts from all the things I do to the things I don't have to do, yet (e.g. toileting...). I use technology whenever possible for things like shopping (Instacart), doctor appointments (video or phone whenever possible), cameras with motion detection (nanny cams) to keep an eye on things...

Going out here and there is fine and relatives/friends always want to stop by for a visit but finding someone to stay over, while you take a 'breacation' costs $$$ and it's hard to find someone you trust. There are days when it's hard to find a caregiver support group or even someone with whom to talk and that's the hardest part. I want to go somewhere but where do I go during a pandemic?  I have no siblings and one child who has little ones of his own so the only option (I am aware) is paid PCA overnight care $$$.

My mom mostly sleeps late, goes to bed early and sits in a chair looking out the window most of the day, so I'll try to count my blessings instead of complaining (that's hard too).

PEACE OF MIND to all!!!