Krissie: Observations

So a lot of thoughts are going through my mind, lots of things to do today.
Most important, Alex is coming over!!! It’s been almost four weeks since I’ve seen him. I don’t know why, and I suppose I’m going to have to take the bull by the horns and talk to Erin about it, about whether she’s wanting to pull away, but maybe I’ll let it pass for today. So much going on.
In the meantime, I have to find the Power of Attorney papers and all Ma’s financial info and start filling out forms. The Medicaid form — she doesn’t have money for assisted living or a nursing home. Applications for the assisted living place and the nursing home. Which is going to be massive.
You guys helped me gird my loins yesterday. (Sounds like doing something to steak). She said when she comes home she’s going to have to go out with me a lot more, and go down to the day programs at the nursing home. That’s more driving, more things I have to do. The idea makes me want to scream.
Deep breath.
And I haven’t even talked with the doctor and social worker about my mother’s mental health issues. About the various mental hospital confines. About the massive number of shock treatments she went through. Which is behind all this.
I’m past the point where I think anyone will blame me, and I’ve had nothing but support from my niece and my cousin (the only two relatives left who might have a say in things). So we’ll see.
So great joy (Alex) and a big-ass hassle (financial forms) and more time in the car (the hospital is 20 miles away). And being strong, and sticking with the knowledge that she really should not come home again.
Crap crap crap.
Deep breath. One thing at a time. Bird by bird.
First thing: ask for an extension on my deadline.
Second thing: start filling out forms.
Ack!
I can do all this.
In the meantime, God bless Nora Ephron and all she meant for all of us, women in particular. A woman of wit and grace.

29 thoughts on “Krissie: Observations

  1. julianna says:

    You know, Erin might not be bringing Alex over as often because she feels awkward, or she’s not sure if you want to see him as much as before. If you emphasize to her that you’ve missed him and you would love to see him as much as possible, you may make her feel more comfortable bringing him over more often (without having to have an awkward conversation where you ask why you haven’t seen him and she feels she needs to defend herself).

    Good luck with all the Mom stuff!

  2. You know what Krissie, even though this is awful right now I see it as positive. You’re taking all of the right steps, moving in the right direction, even if you can’t recognize that yet. You will have YOUR life back soon. You will have some peace and quiet, soon. I can sense it. Keep crossing off those items on your to do list as you make progress. What you’re going through right now is hard, but it will get better. Big hugs.

  3. I agree with Roben. You are doing all the right things. Just remember that they are demanding, even filling out forms, so give yourself breaks and time to relax in between. Filling out that stuff can be very stressful. So be good to yourself throughout all this that you are doing.

  4. Karen says:

    Krissie, my cousin called to say my aunt died yesterday at 92. She lived with my cousin and her husband for the past 14 years and those years were spent with my cousin acting as a 24/7 caretaker. She couldn’t/wouldn’t place her in a facility. My cousin’s health is shot from the stress of taking care of her mother. Just remember you are filling out the forms to avoid the above. Check with the hospital and see if there are social workers who can help you with the paperwork, or do they know of a senior advocate who can help.

  5. Karen says:

    Check with the hospital and see if there are social workers who can help you with the paperwork, or do they know of a senior advocate who can help. Call your county office on aging and see what help is out there for you.

  6. Kate says:

    Hang in there Krissie! You’re awesome, and this too shall pass. In the meantime, serious positive vibes are winging their way to you.

  7. Hi, Krissie. I am mostly a lurker on this site but your situation is so similar to my own that I had to comment. I went through the same exact thing with my father. I know how overwhelming it is — I found myself standing in the shower, crying in frustration and anger and pain at regular intervals throughout the process — but I also know you can get through it and, most importantly, once you (and your mother) come out the other end, it will be worth it. You will be able to breathe without guilt and worry and resentment strangling your every breath.

    Two things I strongly suggest you do to make the process less difficult. First, consult a lawyer about having yourself declared your mother’s legal guardian. Having power of attorney isn’t always enough to authorize you to make decisions for your mother in the eyes of everyone involved. As an example, having my dad’s power of attorney was enough to get me designated as his Representative Payee by Social Security and also authorized banks and creditors to talk to me but the Veterans Administration (from which he also received benefits) did not recognize it, nor did the assisted living facility. They said the power of attorney didn’t authorize me to make living and/or healthcare decisions for him. To do that, I had to petition the court to become his legal guardian.

    Second, get a notebook and an expandable file folder and document everything. Seriously, everything. Make a note of every phone call and conversation (the date, who you talked to, what was said) with anyone involved in the case, including doctors, Social Security, Medicaid, the assisted living facilities, the lawyer, and your mother. Also keep every letter, every note, every scrap of paper that has anything to do with the situation. You will be amazed at how often you need to refer to it, and how invaluable it will be when you’re on the phone to Medicaid or the assisted living facility for the fourth time in a week and can confidently say, “I spoke to so-and-so on such-and-such a date and he said this.”

    It’s going to be hard but you can do it. Just remember, one step at a time and take the time to cry when you need to.

  8. Tracey says:

    I want to chime in with Karen here. I watched my MIL drive herself insane trying to take care of her mother, keeping her at home long past good sense, because she could not admit to herself that she deserved a measure of peace (and she was afraid of change). You have your own significant challenges to meet. Time to let the professionals lovingly deal with Mom.

  9. All the financial stuff is a big ass pain but fortunately there are people out there who specialize in this kind of stuff. The place where Mom is at right now is private pay only but their finance office has given us information on payments options. For example, this facility does not take Medi-Cal (California’s version of Medicare) but they referred us to an expert who told us that Mom does qualify. She sent us links for California but a quick google search found something similar in your state. http://www.nursinghomeinfo.com/vermont/

    I would recommend calling assisted living places/nursing homes. Ask to speak to the finance office and ask them if they know of anyone who can help you navigate the financial end. There’s more help out there than you realize.

  10. Putting my dad in the nursing home was one of the hardest things my mother and I ever did. He wasn’t happy and he was confused by the Alzheimer’s and just so clearly frightened but trying not to show it. It was terrible to see. So were some of the days that followed. It pains me even now to remember. It was still the right thing to do.

    I know that many people have noted here that your mother might turn out to be happier in a home and I certainly hope that is the case, for both your sakes. But even if it turns out she isn’t happier, it still can be the right and best thing to do. No matter how hard it is.

    Good luck with all you have to do. And the advice to document everything seems really, really wise!

    Hugs.

  11. I’m going to add that you make sure you keep track of every dime and every receipt. Even a cup of coffee if it is related to your mom.

    My grandmother was a drug addict and in an effort to take some strain off my dad, I started helping care for her. My dad said, repeatedly, that I didn’t really understand how awful she was and that I was to keep track of every little thing. Not long after he had a stroke and died. I was left taking care of my grandmother and the nightmare began.

    Long story short, she talked a distant family member into ‘rescuing’ her and once she made it to that person’s home, she hired a lawyer. The lawyer came after me and my mother, to sue us for thousands of dollars we ‘stole’ from my grandmother. But I had kept track of ‘every little thing’ and blew the lawyer right out of the water. So to speak.

    Keep track of every little thing. With your mother’s mind the way it is, you may need it.

  12. Barbara Cameron says:

    Krissie, I don’t want you to feel any more overwhelmed than you already do. Some of what others wrote are specific to their situation. I never needed to become a legal guardian to take care of Mom’s entry/stay in a nursing home. Just a POA. Also, you won’t be talking to anyone about Veterans payments, etc. If your mom qualifies for Medicaid — and most elderly women do these days with what they get from Social Security and what they’ve saved — her Social Security check will be sent directly to the nursing home. There, they’ll bank a small amount for things like haircuts and personal needs (I think about $30 a month).

    I doubted I’d ever have trouble from a relative over what I did with Dad or Mom but I kept a notebook of expenses for him. Unless your mom has a lot of money, I doubt you’re going to have any trouble with the two relatives you mentioned.

    Back in “the old days” people might have kept their loved ones in their homes but the old people didn’t live long and then they died. These days our elderly are often very old and we’re not spring chickens ourselves. Most of us are not experts in elder care or physically up to caring for our elderly (you were lifting your 150 lb mom?!). I had to work to keep a roof over my head. If my mother had wandered and been hurt or my dad smoked while on oxygen and blew everyone up I could have been thrown in jail.

    My mother loves the nursing home and before she got ill recently and lost some of her energy, the management used her to greet new patients. She has friends there, regular meals and activities she enjoys, and I never have to worry about her falling and dying on the floor and not being able to help. And they know warning signs of illness and get her medical care there or send her to the hospital when necessary.

    There is no place for guilt in your situation, Krissie.

  13. Anne V says:

    Krissie,

    One of my best friends has her 93 YO mother and 87 YO auntie living in on her property in two eensy houses she meant to rent out.

    Auntie is a dream come true – independent, still (very competently) driving, takes care of chickens, composts, has wee little orchid collection – totally and completely on her game, has signed herownself up to go into assisted living this fall, because she just can’t see making the young folks shovel her snow and stack her wood anymore. She makes the best gingersnaps ever, occasionally dog sits for me and dragged one of her great-nephews kicking and screaming to an A in trig this year. I have begged Auntie to come to my house and assist my living, but unfortunately she thinks this is a joke.

    Mother is another story. Multiple MH hospitalizations & many random diagnoses with equally random treatments over the years have resulted in an addled, panicky, demanding, often unreasonable and more frequently than not unpleasant lady. She is physically and psychically fragile and manipulative and very difficult in all the ways anyone can come up with. She doesn’t take her meds, she lies about it, she spends her very limited income on various things she sees on TV, she calls the Sheriff to report ghost invasions, she has tried to hire ambulance chasers for non-existent accidents.

    Her behavior is so out of hand that they can’t keep a cleaning lady, home health aide, nursing assistant or even a volunteer reader. The grandchildren will not go and see her for anything. My friend is in the process of obtaining legal guardianship of her mother the hard way, through the court system, because power of attorney was not enough, and is interviewing case managers, because the relationship has become so volatile, so that she can transition her mother into an extra-assisted living facility/nursing home.

    I know my BF has had a miserable time with the lawyers and the paperwork. I also know that since she made the decision and started whole shebang 5 weeks ago, she has started sleeping properly. She doesn’t show up for our weekly lunches crying. She’s not avoiding the phone or her email. She’s tearing through her work. She has lost 8 lbs.

    It’s a very long story to say basically: you are doing the right thing, and the right thing is often very difficult. much of the stress of being a caregiver is invisible – what you see and what you acknowledge is literally only the tip of the iceberg. it sounds like you’re achieving that tricky balance between taking care of yourself and taking care of your elderly parent and being gentle with both of you. hang in there.

  14. Maria says:

    I say that Tracey’s remark about the professionals is right on. Plus, it apparently was the professionals of yesteryear that made her this way. Therefore, let the professionals of today clean up this mess to remind them that when they make decisions such as shock therapy there are repercussions to their choices.

  15. Oh honey, your mom’s mental history is one of the biggest factors in swinging any vote about what happens next. Please do yourself a favor and write down all the dates and events you remember about the shock therapy and mental institutions before you share it with her docs, as having that information quantified will help them quite a bit in understanding how much her mental state has to do every damned thing. It’s not something they can avoid or discount.

    And huge, ginormous fluffy pink FGBVs and love to you! Paperwork sucks, but it’s awesome you’re finally doing this!!

  16. Fantastic that Alex is coming to visit. Personally, I wouldn’t wait and ask Erin what she has in mind. Let her know how you feel. At least then that’s one thing you’ll resolve and it won’t be playing on your mind, wondering when or if you’ll see Alex again. Grab the moment!

    All the best with arranging for your mother not to come home. Who’s not asking nicely to do these things for her, but expecting it. But you know that already. 🙂

  17. Reb says:

    What everyone else said.

    “she really should not come home again”. Make that a mantra. Repeat it often, to the professionals as well as yourself.

    Nursing is a profession, taking years of training and a lot of skill. She’s your mother, but nursing’s not your profession. You don’t have to feel guilty about anything.

    Have a great day, call for help with the paperwork and enjoy Alex!

  18. I already posted thoughts on your mom situation yesterday, but wanted to add two things:

    1) This isn’t something you’re doing TO your mother, it’s something you’re doing FOR your mother.

    2) As a social worker, I recommend you get a geriatric assessment done on your mom (which a dr may have to order). Assessments evaluate her current state in all capacities (mental, physical, etc.) and can make decisions much clearer and provide documented support for the steps you take on her behalf. Not sure how these are done where you live, but local social workers should be able to steer you to the right place.

    Know it’s rough. Hope this helps:)

  19. Micki says:

    *hugs* you really are on the right track. Believe in your judgement, because it’s very good! (And you know that your mother’s is very clouded by a multitude of things.)

  20. Tabs says:

    Oh I definitely second this reccomendation for getting an official assessment done. It really helped us grease wheels.

    We had a lot of resistence and denial from my grandparents, other relatives, and even the Department of Aging on my grandparents’ unfitness to live outside of a full-time care facility. Neither of them scoring higher than a nine on a cognitive assessment that considers any score under 18 to indicate “severe cognitive impairment” pretty much put the kabosh on any reasonable arguments. It was a great help.

  21. Yes, my mother has absolutely no money and I’d have no trouble at all with my niece and cousin. I’ve been very lax about the finances — paying for everything and then cutting us a check every quarter for what I estimated I’d spent. I forgot that Medicaid would be looking but still, it’s not a problem.

  22. When dealing with paperwork, I have learned to set up a ritual. I get out my favorite type of pen, either a really good cup of coffee or tea, and I put on whatever music is speaking to me that day – often it’s bouncy house-cleaning music. Then I spend fifteen minutes doing paperwork. (Set a timer!)

    Then take a break. Walk outside, feel the sun on your face, breathe deeply, and above all be satisfied with the work you’ve already achieved! If necessary, go back for round two. Repeat until the paperwork is completed.

    You can do this. I have total faith in your ability. Sending hugs and very best wishes!

  23. Windrose Betty says:

    I know it’s so hard to make decisions about elder care. When I married, my husband’s mother (Ann) was caring for HER mother (Elise).

    Ann & Elise had been in the same small town for most of their lives. Elise was a school teacher in that small town for 40 years.

    When Ann was about 70, she hurt her back helping Elise get out of the bath. Elise was already about 90, infirm, and needed physical assistance that Ann was now too infirm herself to provide. And then Elise broke her hip in another fall.

    My husband & I spoke about me giving up my job, about the four of us selling our homes & buying one big home for the four of us. But Hubby had seen the toll caring for Elise had taken on his mom, and said she needed more care than we could provide, and that Ann needed a chance to have her own life without the constant grind of worrying about Elise’s day to day needs.

    So the decision was made to install Elise in a nursing home where she could get the round-the-clock care she needed.

    Elise was not happy with this decision, and half the population of the small town dumped a truckload of guilt on Ann, on top of the mother-guilt Elise added.

    Ann had a very strong, tight, fierce support group, though (the rest of her family, & beloved friends), and we built as strong a buffer around her as we could to block as much of that guilt. Because much as she regretted the decision, much as Elise fought it, much as we wished it could be otherwise, this was the best option for Elise AND for Ann. It wasn’t necessarily ideal for one or the other of them, but it was the best solution for both of them.

    People who try to make you feel guilty about your decisions about your mother are NEVER going to understand your dynamic with her, or the fact that you are doing what is necessary for both her long term health AND YOURS. Don’t let ANYBODY make you feel guilty for these decisions. Your mom may not be happy about it, but if she cannot live independently, then that is the reality of the situation, no matter what she wants. And you have clearly hit the point where you simply cannot give her the care she needs … she needs specialized attention for her problems. She needs people who are trained, compassionate, but NOT emotionally involved with her & NOT subject to guilt or manipulation. You have to consider not just her needs, but your emotional well-being.

    Do not allow others to make you feel guilty for protecting your physical & emotional health. You can’t help your mother if you are devastated yourself. You are not being selfish. You are doing what you must do for both your mom and you to live the healthiest lives possible.

    FGBVs to you in this troubled time. I’ve seen how hard these decisions are, up close and personal, but I’ve also seen the benefits from it. It may not be all roses, but I can tell you that Ann had far more peace in the last years of her life (we lost her to cancer 2 years later), which was a true blessing. She went to see Elise every day, making sure Elise had what she needed & was being properly cared for, but Ann had the peace & quiet of her home restored to her (Elise’s visitors were now invading the nursing home on a daily basis) and the freedom to come and go as she pleased.

    You will still be a caring daughter, there will still be visits to make sure your mom is well cared for, but there will be people there to help with the burden, and that will help you no end.

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