Lisasabella Asked December 2019

Sole caregiver, what happens when I have issues of my own or when I'm gone?

My mother is in a nursing home and so is my MRDD sister. Mother has mild dementia, I bring her home every day for 2 hours, and to visit my sister Sundays. Mom is at a facility across from work, sister 10 min away both 15 min from home. Perfect situation but still a lot of work, long story as to why. I'm Guardian of my sister there's a lot of paperwork and both need an advocate of course. Last week I felt like I was having a heart attack and went to ER. My heart was fine but I was so stressed about being alone and having no one and that I had to take care of them that I discharged myself. I ended up being fine but my question is what do you do when you have no one to take care of you and your the sole caregiver? I have been in and out of the hospital with my mom and my sister and the last thing I need is for me to be there. This time I was lucky but who knows what's going to happen to me next.

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My question is, if they are both in a facility why on earth would you check yourself out of the hospital because you had to take care of them? They have a village taking care of them. I think your body is telling you that it’s time to slow down and put yourself first. Let the facilities handle your mother and sister. You need to take care of yourself otherwise they will both outlive you.

Helpful Answer (27)

I checked myself out more so because I was scared of being alone I have no caregiver or advocate for me, a few cousins in Florida but we barely talk. And even if we did their busy with their lives and family. But yes caring for them was in the back of my mind

(1)

I too used to try & micromanage my mother's care at the ALF where she lived. I was driving myself even crazier than usual in an effort to be all and do all FOR all. The best thing that was EVER said to me was by the nurse in charge of the ALF: she said, Please allow US to do what you are PAYING us to do, which is to care for your mother. Go home and rest, relax, take care of yourself, and have faith in us.

I will repeat what that nurse said to me to YOU. Let the NH do THEIR job! Why the heck are you taking your mother home every day for 2 hours?? There is no need for that at ALL. If you JUST cut that ONE thing out, you'll have two MORE hours in your day to care for yourself. I think you need to do that so you don't wind up passing away before your mother and sister.

Helpful Answer (18)

You should have in place a Special Needs Trust that will take care of your mom and your sister should something happen to you. And a trusted person to manage the Trust.
I would cut back on the bringing mom home everyday for 2 hours. That is a lot right there and it may get more difficult as she declines. Go visit but cut back on the taking her home. Take her to visit sister while you can and while she can.
Take that 2 hours that you now have and give it to yourself use it to recharge, get your nails done, sit and read a book, watch a movie.
And schedule a vacation for yourself. Get away for a week, 2 would be awesome. Or if you can't manage a week now (baby steps here) go away for a weekend. If you don't take care of you now..who will be your caregiver?

Helpful Answer (16)

I have a Special Needs Trust for my sister because she's MRDD has a lot of money from an accident settlement and needed to be on Medicaid and pooled Medicaid trust for my mother. She doesn't have a lot but I salvaged what I could to get her on Medicaid. I was able to keep the house cuz I took care of both of them in the house for 14 years so I am good there. The only thing I don't have is someone to manage each Trust. I have my cousin in PA listed but he's really too busy with his own family. So I have to figure out out who I could appoint I don't want it to just go to the courts. And for myself I have nothing set up, and again no one to appoint to take care of me if I become disabled at some point in time.
I really enjoy bringing mom home for the two hours, she is a lot of fun and a great stress relief for me so I'm not going to give that up until it becomes a burden. When I return her to the nursing home I let them do their jobs.

(2)

So you work, take your mom home for 2 hours each day, and then also have a whole different routine on Sundays devoted to mom and sister? I am exhausted just reading this. When do you:

Sleep
Exercise, walk, stroll
Go out with friends for dinner
Church/bible study/quiet time
Read for fun/watch a movie
Walks in nature
Shopping
Me time
Cleaning
Etc., etc., etc.

I agree with the other posters that your body is trying to warn you.

If I were in your shoes, I would not only be tired and stressed out after years of this schedule, but I would also be very ANGRY at all the demands being put on me by others and by MYSELF.

I think it's time to make changes!

Helpful Answer (15)

Actually as you'll probably see in my replies I enjoy bringing my mom home they're both in nursing homes and being taken care of so for me I'm concerned about who takes care of me eventually. My days of stress are over now, getting Mom on Medicaid and in a nursing home was a pain but doable. But my sister was quite the pain but settled now . She is MRDD and therefore not allowed to be placed in a nursing home, I had to find group or foster homes and get her placed, she got kicked out of three. She's a sweet girl but too needy and does not belong. And her health was deteriorating . Had to store her furniture in between and keep moving stuff for her, the last one made me put her in a nursing home for temporary respite that was fun. I finally got a manager at MRDD to say what you have to do is get her primary diagnosis as dementia then you can put her in a nursing home which is where she needs to be and I was able to get done. Now she's on oxygen and has all kinds of other issues but I got MRDD off my back and her into a nursing home. I still have some issues with Medicaid but pretty much the Nursing Home handles. What they don't cover is her oxygen needs at night taking off her mask I have a private aide coming every night and stuff like that. But compared to what I had to handle before it's a piece of cake.

(2)

Your body is giving you a WARNING!
Listen to it.

Helpful Answer (14)

The first time I left my newborn (with my Mother) I had a panic attack in the department store. Full on palpitations & cold sweats. I told my Mum & she just laughed & said she'd come next week. I'd get used to leaving her. I did. I gained trust she was OK & started to relax. At 6 months I left her in a paid daycare, learnt to trust the staff & relaxed again. Tonight she just got an uber home after being out with the latest boyfriend.

Different of course - but learning to trust & letting go may be similar. Go gently. Little by little. Have a day off. A weekend away. ((Hugs))

Helpful Answer (14)

I love your answer.

(4)

Your parents are being cared for. You owe it to yourself to take care of yourself, physically and emotionally. You sound overwhelmed. Is it possible to speak to someone about being stressed? We can all feel overwhelmed at times.

Best wishes to you.

Helpful Answer (9)

I'm on my own as well and also have those thoughts... was caring for 2 until my Dad passed last April now I am alone caring for one.

Do you really need to take your mom home everyday? Can you cut down on that? I know its hard but it sounds like you need to. When no one is taking care of you.. you should really focus on your own health.

Take care of yourself first.

Helpful Answer (9)

I have been where you are. I thought I was having heart attack and so did my dr. I had tests done and found out my stress and anxiety was off the charts. We as caregivers forget we must take care of us in order to take care of our lo. Take care of you, step back, let the nh do their job and part. You will do no one any good if your health fails. I’m blunt so I’m sorry if I seem bitchy but if you don’t find outlets for you, your stress, etc. you will have a heart attack! Then what? Who will do what you are doing?
I do understand truly I do. Just give yourself a break. We are all human.
Hugs

Helpful Answer (7)

My blood pressure went through the roof and I also had the heart palpitations and a series of heart tests. It’s no fun!

You really need to focus on your own health issues. My mom was living with me at the time but your mom is being cared for.

You know that you have to let this anxiety go or go speak to a professional about it. Stress will kill you. Extreme stress will bring you nothing but misery and heartache.

Helpful Answer (6)

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Sole caregiver, what happens when I have issues of my own or when I'm gone?

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