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My 85 year old mom was diagnosed with Mid-stage Alzheimer's 4 years ago and moved in with my wife and I just 2 months before our wedding. My mom was very much against going into assisted living and the house she was living in belonged to her boyfriend who had died so his daughters took it over. I had the easiest career to give up for my mom so I became her full-time caregiver in our home. My oldest sister lives one state away but my younger sister lives 8 minutes away from us. My younger sister's oldest son died in a car accident 2 years ago so I understood why she couldn't help at all after that....she already helped very little because she's very busy with her career and as a coach on top of that. The thing I'm starting to resent is this: I watch both sister's take trips at least several times a year but never offer to take mom or to even just take her for a weekend to let my wife and I get away. We take mom with us most of the time. My older brother moved in with us as well a year ago. He has his own mental and physical disabilities...he helps by paying rent and even watching mom for a couple hours so I can watch my teenager play volleyball sometimes. He's great for a few hours but I don't like leaving her with him over night as he also gets confused. I'm worn out. My mom is still against going into a home and she can't really afford a good one on her social security. I adore my mother but I can't see doing this for another 4 or 5 years. Any and all advice is appreciated. Thank you for listening to my very long rant. ;)

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Let me say, that I was you! My husband and I had my mom for 15 years in our home. Add my husband to an angel and saint list! He earned it!

I cared for mom and dad in their home before that, then mom in her home for five years after daddy died.

So, I definitely qualify as one who has walked in your shoes and understand how you feel. Did my siblings help? Nope! Could they have? Absolutely! Two of my brothers were retired. They found plenty of time to do whatever they wanted to do regarding themselves. They ate at my house on holidays. They would occasionally drop by to visit mom in between holidays for all of 15 minutes, and so on.

Anyway, so I will empathize with you, because I have been there and know how much it hurts. I know how important it was for me to feel compassion from others. I know how slighted I felt if no one bothered to show any empathy or worse, unfairly criticized me, especially when they had no clue as to what they were talking about. Hey, it’s all water underneath the bridge now.

I will tell you what helped me the most. Go speak to an outside objective professional with proper training. I am speaking of a social worker, psychiatrist or psychologist.

Committing a proper amount of time to grow and learn about yourself and others will definitely pay off. Please don’t go for a couple of weeks and quit. That won’t help.

This forum helps. There are wise and caring people that are willing to help. They are drawing from their own experiences. Sooner or later you will connect to somebody that speaks to your situation.

As others have said, we cannot change anyone else’s behavior, so don’t even bother anymore if they aren’t willing to help. Instead, focus on yourself. This is what helped me the most.

Sure, honor your feelings. That’s a natural thing to do. It’s even healthy. It isn’t healthy to bottle up or suppress our feelings but please don’t get stuck there. Please don’t sink either. Do all that you can to move forward and find viable solutions. Caregiving is the toughest job that I ever had! Focus on solutions.

Your siblings don’t have a clue as to what you are living. My brother found out when he did step up and take over after I had done it for a bazillion years. I am proud of him for apologizing to me afterwards. Do you know what else he said? He told me, “As I took care of mom, your words kept swirling around in my head and all I did was belittle you, ignore you and now I know exactly how you felt.” I cried as he as telling me these things. I finally felt validated by him. It was a turning point in our lives.

I wish you peace during this difficult time in your life. I will keep you in my thoughts and prayers.

I have been through your journey. Our family journey ended recently. My mom was placed in hospice where she died at the age of 95 with end stage Parkinson’s disease. She died with dignity, free of the agonizing pain. I am grieving, it’s only been a week but I am also joyful because mom had been ready for a long time to reunite with my father in the afterlife. I believe that she is finally in daddy’s arms again and dancing to their favorite Sinatra tune!
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rwtrouble13 May 6, 2021
Wow! You and you're husband are amazing for doing it for 15 years! I can honestly say that I don't think I can do it that long....I just don't want to put her in a home until it truly physically gets too hard on me....and maybe even then I'll still keep her at home and bring in help. I meet with a social worker here Monday to see where she's at and how they can help now and in the future. Thank you for sharing your story with me...it has truly helped and I'm sure your mom is dancing with your dad now and I'm sorry for your loss.
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You are a good and faithful soul!

Some things to consider. Almost no one ON EARTH will say they WANT TO ENTER RESIDENTIAL CARE.

As a caregiver, you need to be concerned with what she NEEDS to keep her SAFE and as comfortable as possible as her condition declines. If she has the symptoms of dementia, her negative reactions may not be authentic expressions of her feelings.

In any event, her emotional responses should not be considered as deal breakers when seeking the best place for her and for you and your family. As long as you can visit frequently and get to know the staff and management, you’ll soon get a feel for the type of residence that may work for her.

Have you done an assessment of ALL the local residential facilities for which your mom may be eligible? If you find a place that does take Medicaid, you should realize that by law, care provided to Medicaid patients must be the same as self pay residents.

You may also FIND that some local facilities provide “respite care”, so that your mom can stay for a few days and give you and your wife the time away that you both deserve.

A respite visit an also be a good way to find out how your mom might adjust to permanent placement, so worth considering.

If you want to maintain your relationships with your siblings, you will need to give up expectations that they’ll be there for you or your mother. As soon as you get “worn out” enough to consider YOUR NEEDS as rightfully being important enough to warrant your attention, you’ll realize that you need to create a balance for yourself, without their help. That’s what THEY have done.

Ask questions here if any occur to you. My own mother broke her hip at age 89, and I moved her and her dementia into my house, where I slept on the floor beside her bed for 9 months, and gained 60 very unneeded pounds. When I tricked her into entering a wonderful residence less than 3 miles from my house, I expected her to be dead in 6 months. She lived there for 5 1/2 of the best years of her life.

We all have felt the feelings you are feeling. Please remember that the decisions you make for her with love and respect, may not be perfect, but will always be the best you can make. Be at peace with them.
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rwtrouble13 May 6, 2021
Thank you so much. Great advice! I will check out some local options for respite care and future residence for sure. I, like most of you felt I'm sure, am just starting hate that feeling that my life is on hold...I've always dreamed of traveling more when my youngest graduates next year but seeing my mother still doing so well physically has scared me into thinking those dreams may be put on hold. If I learned anything when my 22 year nephew died in a car accident 2 years ago, it's that life is too short so we need to live it every day. ;)
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Sadly, your level of expectations from your siblings for help is probably waaay off of what they want to do. Or are able to do.

Just b/c YOU feel like caring for mom in your home does not mean that they should also feel that way--

My YB took mother and dad in 25 years ago. At the time he was sure this was a great plan----daddy passed 17 years ago. Mom is a lot to deal with, at age 91 and YB complains a LOT about her, BUT, the other 5 of us sibs were 100% against this move at the time, and the years have proved us right.

YB needs help, but doesn't want strangers in the house. He will not even allow us sibs to do much--and we would. One sister doesn't 'do', but she will throw limitless amounts of money at anything. I'll help, but I also have a life and am recovering from cancer & chemo.

Have a sit down with the sibs and tell them how you feel. You need to TELL people what you need, we're not so intuitive that we just 'guess' what a CG may want.

Figure out exactly WHAT you need/want and then ask. They may say no and you need to expect that. I wasn't on board with the folks moving in with YB, so it has often been with gritted teeth that I 'help'.

You cannot make your sibs help out. You cannot make them feel the need to care for mom as strongly as you do. All you can do is respect their decisions. Maybe they don't think mom should be living with you and they don't want to support that dynamic.

You don't know until you ask.
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You cannot change the choices of others. Others are in charge of their own lives and their own choices and you are in charge of YOUR life and YOUR choices. If you can't go on now, then honor and recognize your own limitations and place your mother in care. If she has assets they should go to her care, and if not you should apply for medicaid for her care. I am sorry, but these are the hard cold facts. Your Sister has made other choices. You don't have to admire her choices, you don't have to like her choices, but you cannot change her choices.
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Rant away! This is what this forum is for. And it's very helpful to be able to vent and talk openly about your issues and get some advice from some others that are also in the trenches.

Your mom is lucky that you were able to stay home and care for her in your home. She may not get that or appreciate it, but you should feel good about it.

It is VERY common for the non-custodial siblings to do very little. Have you asked them to help? You said they don't offer, but you may have to ask instead. AND you have to be able to accept no for an answer. Caregiving is hard and some people just do NOT want to do it. And, unfortunately for you, this is their choice to make.

Tell your sisters that you are getting burnt out. Can they come to your house and care for your mom so you and your wife can go on a weekly date? Or take mom to their house to give you breaks? Your local sister, weekly seems reasonable. Out of state - maybe one weekend a month. But they might be unwilling and you need to find a way to be OK with that. If they don't want to put in time and caregiving, are they willing to pay some money for you to hire an aide to watch mom so you can get out?

At some point, as she continues to deteriorate, whether she likes it or not, she may have to go into a nursing home. That's OK. It's not what anyone "wants" but sometimes does become necessary. You need to take care of yourself too!

You have a big heart - you also took in your brother! At least he can help with your mom a little bit. Better than nothing!
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rwtrouble13 May 4, 2021
Thank you. You are right. I do need to ask for more help even if I get the "no" I might expect at times. I've got an appointment with a social worker next week that will asses where we're at and be able to help with needs in the future through Medical and Medicare so that's a step in the right direction. Again, thank you for listening!
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