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

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

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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.

Alzheimer's & Dementia Care Decisions Family Caregiver Stress

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Stop taking your mother home for 2 hours every day unless you’re intent on becoming her sole primary caregiver every day 24/7. Leave her where she is, take a vacation & visit her once a week. Do NOT take her home ever again, For example, you take mother home & she gets injured, you will be blamed & can forget about worrying about not being there for Mom & Sister. That job will be taken away from you & appointed to State. Nursing facility could even take you to court over it. Yes, a “what if” scenario, but it could happen. Good luck & hugs 🤗

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Lisa.

Thanks for clarifying. Now I understand. I think most of us are concerned about the future in one way or another.

Your anxiety most likely stems from watching elderly parents and your own health scares.

I think about if my husband should get sick because I can’t bear the thought of seeing him suffer or a diagnosis of something in a late stage. I don’t want to have extreme anxiety about it. I get upset because he never goes for any check ups. Some people don’t go to the doctor if they aren’t sick. He is like that.

Stay on top of your health. Maybe go speak to someone about your anxiety and find coping skills. Extreme stress is bad. If you are dealing with normal concern then that is understandable.

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Can you clarify please. Are you concerned about your health and your future which is extremely valid or are you concerned about your mom if you become sick? Your mom is being cared for. Remove that stress from your mom.

Maybe speak to someone about your anxiety.

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I'm concerned that if something happens to me to where I am handicapped or incapacitated I have no one to take care of me. I am in good health now but you never know I might get hit by a bus tomorrow and be disabled forever

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Every day for 2 hours, why? I visited 2 or 3 times a week....then it went down to once a week, then longer. All she did was sleep when I was there. Dementia gets worse, it's a sad thing to watch...

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I don't get it. You aren't the caregiver sole or otherwise. The nursing home is. You are visiting with your mom. So if you need to take a break from that to care for yourself, she'll still be cared for.

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This is a great observation! I can see if her mom was living with her as mine was with me but she is already being cared for by a staff.

It doesn’t do any good to create additional anxiety.

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Lisasabella: You raise a very valid question. One definitely SHOULD plan for his or her elder self because it's not a matter of if you will need help, but WHEN. One shouldn't be so naive to think that they won't need help for their elder self and it's good that you know that. What people can do is to put things in place for themselves, e.g. long term policies, etc. DH and I have.

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Good advice what do you mean by Long Term Policy?

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my plan is to move myself into a continuing care retirement community after my husband is gone. My DPOA is now held by my attorney of many years; my DPOA for health care is held by my stepson with his wife as back-up, but I don't plan to keep that in place. I plan to find and hire a professional fiduciary to take this on for the long term. I did buy LTC insurance for myself when my husband was diagnosed with dementia. Good thing I did. He's going on 10 years now with 24/7 caregivers at home. Needless to say I'm spending down our retirement! He & I were the trustees of our revocable trust but when he was declared incapacitated I was sole trustee but subsequently appointed a fiduciary institution to act as co-trustee and then successor trustee if & when I'm incapacitated. I've started looking for CCRC's & visited a couple but really need to do more work in this area. I'm 72 and don't want to wait until I can't make my own decisions about this stuff.

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That is great advice thank you. I have work with two elder law attorneys for my mother and sister but both of them I had issues with , after they got paid their big chunk of money no more help.

Are the CCRC's expensive? I ran into some information on I believe the same thing when I googled my situation but it seems like they were cost prohibitive. But I exactly feel the same way I want to get this done now while I can.

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You are fortunate that they are both in a home and safe.

You have to take care of yourself first or you won't be around to visit your mom or sister.

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I too am sole caretaker for adult stepson who now lives with me and I am pp for. and there is NO ONE ELSE to step in when iam no longer able to do it - no family worth a damn in my humble opinion and no real social circle for either of us - I know, poor planning on my part but that's the way it is (and it keeps me awake at night ). and he is going to get whatever I leave behind - he is tight with the $$ thank G but being schtz AND DYsleczic means will need help just with regular day to day AND SSA wont remove the need for a PP no matter what age he gets to NO I'm not complaining but any realistic suggestions would certainly be appreciated. thank you

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After reading through the helpful advice and OP’s responses, I’m thinking that instead of spending those two hours a day picking up Mom, maybe attend some kind of social meeting, book club, class. Sounds like you need to build up a circle of friends. I know it’s hard to make new friends but maybe you may click with someone who would be kind enough to go to ER with you in the future if needed. You may be surprised of the kindness of people. (I have a circle of friends I’ve met at my church). I care for my husband 24/7 but make it a point to go to weekly bible study and church. I also slip away for a monthly massage...that’s just for me! Also, you need to let go and let the facility handle things when you can’t. Why on earth would you check yourself out of the hospital when your loved ones are already placed and safe. Sounds like your entire existence is work and caregiving. Spread your wings a little bit and try to make other connections. Even if you make arrangements for your own care as you age, it would be nice to have visitors (friends) other than just caregivers. Best of luck to you. Please try not to worry.

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If you are hospitalized or sick, who cares for these ladies? If you take a vacation - and you should! - who takes care of these ladies? I'm thinking that the folks in their long term care facilities will continue to care for them. You do not "have to" bring mom home for 2 hours daily; you prefer to do this and it is admirable. Please arrange to have their financial needs cared for automatically from their accounts so you have one less thing to worry about.

Please visit an elder law lawyer. Get your own POAs, will, and any other legal needs for yourself addressed. If you were to pass away or be unable to take care of mattes for these ladies, please have documents prepared to deal with this. If there is "nobody" then the state will become their care decider and legal guardians will be appointed for each.

You may wish to create a binder that holds all these important documents. You may also wish to put easy to read statements on your refrigerator that let EMS know to call the facilities where your mom and MRDD reside in case of emergencies.

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The nursing homes which they are in will take care of them my concern is who will take care of me since I have no one if I become disabled or die. As far as financials what do you mean by cared for automatically? They're both have Medicaid their social security and any Pension funds are direct deposit to the nursing homes. I have already worked with several Elder Care attorneys on Will's POA, etc. and have all documents, unfortunately the person appointed is a cousin who is very responsible but he's in PA with his own family not sure if he will do the right thing but I have no one else . So bottom line even if I have the documents if I don't have someone I can count on it doesn't matter. Which is my whole point. The exception on documents is my sister guardianship requires court counting every two years for every penny in and out. No one wants that responsibility.

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Actually there are two items to be concerned about for you.
1. What will happen to Mom and Sister if something happens to you.,or
2. What will happen to you if something happens to both of them.

For No. 1 you should see an elder care lawyer.
For No. 2 you should start imagining how your will change and what course you want to take if Mom and your Sister are not here.

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When mom was alive it was an all-consuming stress and worry for me, but I managed to care for her myself for 15 years. Since your loved ones are already in a nursing home, they will take care of their needs if something happens to you. I did not have that luxury. She was never in a nursing home and she suffered extremely severe Alzheimer's disease to the point she got bed ridden, could not talk or respond to the environment, and could not even more her arms or legs so I had to do range-of-motion exercises several times a day to keep her arms and legs from getting contractured. She was incredibly healthy despite this kept alive with a feeding tube, bowel schedule, and I put her in the living room every day which helps with breathing. Alzheimer's did not kill her--she had liver tumors and liver failure, but she never suffered. She really died a very peaceful death and very quickly once symptoms appeared. She was 90 years old. The hospice nurse never had to give her any narcotics either. She was not in pain because I would have known--she was still capable of moaning. She moaned when I had to turn her and clean her bottom. She hated that but I had to keep her clean. She skin was delicate like tissue so I had to clean stool and urine as fast as possible. I also bought a plentiful supply of diaper rash ointment and lotrisome cream. I changed her diapers an average of 4 to 5 times a day.

She did not have a single bed sore and her skin was in great condition due to the stellar care I gave her.

Do your best to care for yourself--keep your weight down, eat right, exercise. Best medicine on earth and start some kind of exercise program gradually at first then build yourself up. I started riding my bike at first a few minutes a day..now I can do like 40 - 45 minutes a day--one speed and with solid no-air tires! I make time and do this every single day.

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Great post, great replies. For me, the reactions started coming when I’d gotten Mom better placed. I think a lot of times the body waits to get sick, react, etc., until the tasks are done. You need a short break lisabella, please take 3-4 days off from all duties just to reset.
I’m a sole person, too, wondering ‘who’ will help. A few years ago, a lady posted here that she interviewed people and hired someone a good bit younger, drew up a legal agreement. I kept that post! But getting in independent living in a continuing care community is the way I plan to go (I’m mid 50s), as someone said.

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As a sole caregiver myself I agree with prior posts.You clearly are stressed and your body is letting you know Take heed to it. You said spending time daily with mom is a stress reliever but your still stressed so maybe reduce the days.Find another outlet to reduce your stress.Take care of you first.

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ItSounds like you’ve done a stellar job for mom and your sister. Do you have a close friend who would assume the role for you? It sounds like your family members aren’t close or you aren’t comfortable with them in the role. Talk to an elder law attorney to see what your options are. It’s causing you a lot of stress, so also talk to your doctor about that. You don’t want to jeopardize your own health. Best wishes.

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For yourself, as you're asking "who will take care of me" do you have long term care insurance? If not, would you have the resources to hire professional care givers? Besides the caregiving, were you able to work and derive an income from a job? Don't know your age but think about moving to an independent living apartment complex ( usually age 55+ , others 62+) where you can establish friendships with neighbors.

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I do not have long-term care insurance maybe that is an option. I have resources but know that private caregivers are pricey. I work and make a good income although they do not have health care insurance once I retire, I am 59. I will check into the independent living complexes that is good idea.

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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?

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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.

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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.

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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.

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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.

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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

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Several of us cross our fingers. You need friends who care enough about you to check in to see how you are doing. The paradox of care-giving is that it tends to be isolating, so finding friends like that is difficult.

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I love your screen name. Kind of says it all. That’s exactly how I felt when I was caregiver to my mom. We lose ourselves. Our whole world becomes caring for them. Even when it’s over we still feel the after shock.

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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))

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I love your answer.

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

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As others have said, it sounds like you need to cut back on what you're doing. I've read numerous comments on the forum about caregivers predeceasing the person they're caring for due to overwork and stress. That's not in anyone's best interest. You have to take care of you or won't be able to take care of anyone else.

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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!

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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.

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CM,

I was thinking the same thing or maybe panic attacks. Does happen with severe stress.

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it ended up being a spasm in my diaphragm from drinking too much cold milk too fast, lol. Not that it won't be something more severe next time but that is my point I need to be ready for next time. I don't want to sit in the emergency room alone.

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Well, it sounds to me like you need back-up, and more immediately you need time off. You're living with such a high level of sustained stress that your body thinks you're having a heart attack. Not so, not now, but what if it were? - and what if you're going the right way about making it happen?

You yourself identify the key problem, that there is only you taking care of these two important people and holding down a job. Assuming there are no other family members at all? - there are still ways and means, including hiring professionals to cover you. What services have you researched?

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I do need a backup for when I am unable but really don't need the time off, taking my mom home for two hours is stress relief she's actually pretty funny and makes me relax. If she would decline of course I would stop doing it. After that I go to yoga class or go shopping or whatever else I feel like doing. I don't have any friends anymore we have all parted ways and that is a concern, I need to develop new friends somehow. But my biggest concern is who's going to take care of me if I become disabled. I reached out to my banker suggesting I get a trust for myself but she said it's very expensive and steered me away from it. I understand I could get a lawyer to handle, I have worked with several developing my sister Special Needs Trust, mother's Medicaid pooled trust, wills, POA'S, Etc. But I can see the money being drained away. They're not in the business to be there for you . I'm sure I'm not the only one in this situation but what do people do?

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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.

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

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