Overwhelmed

Posted by ssbionicknee @ssbionicknee, Oct 1, 2018

I live with my elderly parents. My mom began having memory problems in 2011 and we found a wonderful neurologist who was working with her. I have a sibling that lives about 3 hours away and for a few years she would help by going to appointments. Then mom's short term memory got worse and she became angry with the neurologist because the memory test were too difficult. At this point there were some medications and something called a memory clinic. Mom refused to go back and my dad supported this decision. Now mom's short term memory is really bad and dad is having some cognitive issues as well. They need to move to assisted living, but have not begun the process. Dad procrastinates and just doesn't get around to things. So, my sibling has washed her hands of this. I just had a knee replacement 5 months ago and will be having rotator cuff surgery in a week. I also need my left knee done. I am doing all I can to prepare before the surgery. I have at least a months worth of meals frozen. I have a friend who is taking me to the hospital. My parents are mad because I made an advanced directive and they are not on it. I do not feel they are able to make decisions on my behalf at this point. My sibling is on, however, she never seem to be able to come and help. She has not been here since before my knee surgery. My son is unable to be much help as he is working and taking classes. And that is the extent of my immediate family. They need help making decisions, but don't want help and I feel stuck in the middle. They will be unable to give me the help I need as I recover. Dad says he can do it, but I ended up doing more that I should after my knee replacement. This time I will not be able to use my dominant hand. I am going to have to rely on friends that are available. And there are days when they are not. I am feeling overwhelmed and, I hate to admit it, but resentful, towards my sibling. My hands are pretty much tied at the moment. Some days I would like to live on a deserted island. šŸ™‚ I will say that I am active in my church, so I am not stuck at home all the time. But I do feel like we have reversed roles now.

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I can certainly understand your frustration and thinking of escaping to a desert island! My husband began having memory problems in 2011. The Mayo diagnosis was viral encephalitis. Now, he has hearing issues, short term memory issues and his long term memories are notvery accurate at all, although he is sure he is correct. Lol.
He has 4 children, but none of them can help. Two of his daughters visit from out of town about once a year and only stay for a few hours. My daughter and son-in-law do all they can, but their lives are busy with work and my granddaughter. We have been married for 15 years and he has been ā€œsickā€ (for want of a better description) for 7. I dream of a vacation, away from caregiving duties, but have not discovered a way to do this. Iā€™m coping, butvery tired, physically and mentally.
Your sibling may have washed her hands of your parents, but surely she cares about you. Iā€™m sure others have no idea how hard and isolating the job of caregiver is. You are facing multiple surgeries and will need to heal, in order to continue as caregiver! Is respite care available through your city or county? Do you have Power of attorney? Is there a way to insist on moving your parents to assisted living? I visited an attorney whose specialty is elder care and found there were several things I had not been aware of. She was very helpful in protecting assets and potential assisted living for my husband. Would your sister come to help you, at least immediately after surgery?
Iā€™m sorry this is a bit long, but wanted to offer understanding and support. Others may have additional suggestions, but if nothing else, we all sympathize with your situation and are here for you.

REPLY
@shirleymac

I can certainly understand your frustration and thinking of escaping to a desert island! My husband began having memory problems in 2011. The Mayo diagnosis was viral encephalitis. Now, he has hearing issues, short term memory issues and his long term memories are notvery accurate at all, although he is sure he is correct. Lol.
He has 4 children, but none of them can help. Two of his daughters visit from out of town about once a year and only stay for a few hours. My daughter and son-in-law do all they can, but their lives are busy with work and my granddaughter. We have been married for 15 years and he has been ā€œsickā€ (for want of a better description) for 7. I dream of a vacation, away from caregiving duties, but have not discovered a way to do this. Iā€™m coping, butvery tired, physically and mentally.
Your sibling may have washed her hands of your parents, but surely she cares about you. Iā€™m sure others have no idea how hard and isolating the job of caregiver is. You are facing multiple surgeries and will need to heal, in order to continue as caregiver! Is respite care available through your city or county? Do you have Power of attorney? Is there a way to insist on moving your parents to assisted living? I visited an attorney whose specialty is elder care and found there were several things I had not been aware of. She was very helpful in protecting assets and potential assisted living for my husband. Would your sister come to help you, at least immediately after surgery?
Iā€™m sorry this is a bit long, but wanted to offer understanding and support. Others may have additional suggestions, but if nothing else, we all sympathize with your situation and are here for you.

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Hello @ssbionicknee I am sorry to read of your heath challenges and those of your parents. That must be very hard and I think it would be impossible to not feel overwhelmed in the situation you find yourself in! That must be very hard no matter what!

I don't have any magic solution, but one of the things I did think about when I read your post was that if your parents are having cognitive difficulties perhaps it is time to get some legal advice regarding how to help direct their decisions or hand them off to others in the family. Sometimes a trusted advisor can suggest things and be listened to in ways family aren't or can't be.

Also when my wife began having cognitive issues I made many decisions, which she had not input into and was unaware of. One of those was me being her guardian for healthcare and our daughter, not her, being mine. Also no one else in either her or my family were privy to those decisions. Just our attorney, healthcare professionals, and our grown son and daughter. Sometime input can be more confusing than the decision making process itself.

Also in our case (and I know every family is different) no family member lifted a finger for her care so I had no choice but to just say 'so be it' and handle things with no expectation of support or help from family. Luckily I had two old friends who pitched in when they could.

I wish you every good out come with your coming surgery! Do you have some help for your immediate needs post surgery?

Strength, courage, and peace!

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@shirleymac @IndianaScott Thank you! As I read your posts, you mentioned things that I did not even include in mine because the post was already so long. @shirleymac, my mom's memory issues also began as a result of encephalitis. She was bitten by a tick and was treated with the wrong antibiotic (amoxicillin) As a result, she got ehrlichiosis which caused the encephalitis. The advice you gave was wonderful and we have tried to get my dad to agree to many of the suggestions. My sister brought up changing my mom from making medical decisions about my dad and he refused. When we bring up ideas for them, they get extremely stubborn and dad has a personality where he gets downright nasty and attacks my sister or I for even trying. That is one reason she has wiped her hands of us. I deliver for Meals on Wheels and know that there are services available. I was even going to have meals delivered, but dad said he did not want them delivered because he doesn't eat that "crap." Respite care as far as dad is concerned, is me. Yes it is offered, but no they will not accept help. There is also adult day care available, which would be wonderful for my mom, but neither of them would go for that. Mom is easily offended about suggestions like that. She lashes out and says I am not a child! She has always loved the news and that is what she wants to watch all day. Each time she hears a story, it is like she is hearing it for the first time. I can see that she is depressed and anxious, She chews her nails and get frustrated easily.Tonight she wanted to pour herself a coke and could not figure out how to get a glass, get the coke out, and pour it. So she just started to cry. We went to help her right away. She is also very attached to the dog, He is like her security blanket. He has a cyst on his side that has been there for years, It got infected last week and he began scratching it. I told dad I was going to call for a vet appointment and he did not want me to call, because he had to make sure that my mom would agree to that. I called and made an appointment anyway because the dog needed to be seen, He was not happy with me, but when he asked mom about taking the dog to the vet, she agreed, So, all 3 of us went. I had to go because I am the one who takes care of our dog, I also am able to answer questions they do not remember. Your suggestions were great! However, my parents have always been the type to not reach out for help and to pretend that everything is ok. I am the opposite. I believe in asking for help in situations like this. My church went above and beyond as I recovered from my knee surgery. I feel guilty asking them to help again so soon. Their church would gladly help, but their attitude has always been that if they act like nothing is wrong, no one will notice and the problem will go away. I try to get out and get my "sanity" breaks. But after surgery, I need people to come and get me. Sorry this is so long. I feel stuck between a rock and a hard place.

REPLY

Donā€™t ever worry about long posts. We all have a lot to say, sometimes. Maybe you could ask friends from the church to come ā€œvisitā€, especially after surgery. In my case, Iā€™m thinking of having someone come in and be with him and introduce the person as an old friend of mine. After all, visitors are way more accepted than someone offering care. Sanity breaks are definitrly needed, but rest is needed, too. Take care of you!

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