Home Again and the Real World Crashes in.

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My mom has had mixed diagnosis. The general consensus is that it’s likely mental illness (depression and anxiety) exacerbated by Vascular Dementia. When she first became ill we thought perhaps it was Lewys but her hallucinations have dissipated and she now has unrealistic worries, and does sometimes become paranoid but overall it it primarily the anxiety and depression that is the worst.

Here is the thing though – she knows it’s happening and that is the crux of the problem. Because she can not organize her thoughts, and everything seems insurmountable to her she becomes anxious and depressed. There is a part of me that wishes she was completely unaware of the way her brain is malfunctioning. She told me today – that she can not think straight, that all things are mixed up and she is fighting it. I can see it in her face, the lines of worry the scrunched up brow, she wants to make heads and tails of every thing that’s going on and can’t . So she rocks and says “I just don’t know what we are going to do”.

Before this – she had a plan – a plan that included hiring someone when the time came to help her and Dad but now they are both resistant to it. At some point it will have to happen but for now I am managing.

Today there was some banking being done, Dad had me fill out the paperwork with him and I applauded that he ask me to help rather than struggle with it. He called in a panic yesterday because he had started to read the forms and could not make sense of them. This happens more and more to him. The constant worry and care he is giving mom has broken him as well and I believe he too is suffering from cognitive deficits. His presents with angry outburst , mad at everyone. Truth is he is mad at himself and he too knows it’s happening. Any time we have to do paperwork, my mother goes into a tail spin, she is certain something will be done wrong, and they will have tax liabilities ( she knows this is a thing taxes and she knows she can not understand them) She is worried that the bank will screw something up she worries that they will lose it all . It took me 20 minutes to talk to the investment folks and get he paper work filled out correctly. It took me 2 hours to talk my mother into taking a seat and letting me worry about it rather than pacing about and commenting on how messed up it all was. ( Surely this is not good for self confidence – as if she thinks I too am incapable) She will often say your father thinks he knows what he is doing but he does not.

This is the level of confusion and anxiety they have though-

1. Signing and filling out forms has to be done one line at a time. Slowly reading it several times. They will often ask 20 minutes later if it they did it right.
2. Getting an express mail envelope from post office became such a now what do we ask for, and who do we ask ordeal that I just went to post and did it. And even then – when I said just take it to the post and pay them , they seemed confused so I said seal it and I will drive back and get it and mail it. Simple task with multiple steps are too overwhelming.
3. The bank locally directed them to a larger branch for the signing. I told them I could go with them if they scheduled it here and there – but NOT this time. They scheduled it for that time. So it was easier for me to arrange it.

Each one of those steps required me to speak on the phone on their behalf which means giving the person on the phone their permission. I have POA but this in itself is complicated it must be filed ( it is) , and it must be presented to each person you are dealing with so it’s easier to get them to verbally approve. It took 4 hours today to do something that should have taken 30 minutes. That’s no big deal I get that things take more time, but by the time I got home a new crisis had occured.

My phone was ringing as I walked in the house . It takes me 1 hour and 10 minutes to get home. He started the call – “I have a big problem. “

The neighbor brought food. The neighbor has shared left over ‘school’ lunch food with them. ( prepared lunches for students) . There are several cups of peas and carrots. My father panicked – what will we do with all these peas and carrots and chocolate milk cartons .

The big problem was peas and carrots. Not the banking, not the paper work but Peas and Carrots and chocolate milk.

We walked through how to bag the peas and carrots and put in the freezer – and I said either drink the milk or save it for me. BIG problem solved.

The funny thing is that he had completely forgot about how upset he was over the banking issues. That was gone.

So guess if I want pea’s ‘ until Thursday when we finish his paperwork I should be thankful for peas and carrots distracting him.

Did I mention we are selling my inlaws home at the same time? And I am still looking for a job since being layed off.. Probably not.

I do love peas and carrots and Chocolate milk. ( My mother was in the background saying – Oh lord what will we do with all these peas and carrots) .

It took everything I had not tell her to quit complaining there are starving children who would love them. The old mom would have made peas and carrot pie.

Finding ways to find humor is my new part time job. I had to laugh at the worry over extra food. It diverted from the other issues that I know are looming. I will need to pay closer attention to the mail when I visit and offer to take over some of the bill paying.

The time is coming when they will not get a vote about having help in the home. I will put it off as long as they are safe. I have neighbors who check in on them each day. They still do their laundry heat up food in the microwave prepared ahead and do dishes. That’s more than most college kids can do.

I keep laying the ground work and explaining it’s coming. I know it’s soon . The whole point of their scrimping and saving all those years was just this moment. Keep them at home as long as they can. But at the end of the day – one of them will fall, or get hurt or sick and that decision will no longer be theres and that moment is scary like a freight train.

Vascular dementia

The second most common type of dementia is vascular dementia. It’s caused by a lack of blood flow to the brain. Vascular dementia can happen as you age and can be related to atherosclerotic disease or stroke.

Symptoms of vascular dementia can appear slowly or suddenly, depending on what’s causing it. Confusion and disorientation are common early signs. Later on, people also have trouble completing tasks or concentrating for long periods of time.

Vascular dementia can cause vision problems and sometimes hallucinations as well.

Hotels

Hotels fascinate me. Walk for just a while in the lobby or the outdoor areas and without much effort you can see every facet if the society around you. A group of lineman drinking beer an the back of a truck, a woman in what is surely a formal dress bridesmaid maybe in sneakers weaves on her feet as she waits to check in, a sunburned family with pool floats and children leaning heavy onthereblegs, and overheard an adoption meeting mother and daughter, last weary travellers if all ages and at a corner table a group of business suits and laptops. So many stories under one roof.

At the end of the hall a mom throwing together a birthday party for a child .Is she somehow living here and just trying to make it all seem normal? The place is full. Have we all have just grown So tired of a pandemic we have escaped just to change the scenery. The parking lot would be a treasure trove for kids who are hunting license plates I saw 10 states in two minutes.

Most of the places we have stopped there have been crowds most wearing mask. Which again surprises me. You hear so much dissent you expect no one will comply. I am amazed at the landscape of faces all half covered. We are a resilient group we humans.

I have to wonder what mom would think. She would be nervous for sure. Of course I can barely get her to go outside to the mail. So no worries the crazy world of masked hotel occupants will scare her.

I am shocked how busy the world is. I am washing my hands like a speed freak with ocd and others are drinking beers and leaning in to whisper to a stranger. It is a strange world to navigate. But I am happy to be in it not at home for a short time.

The weather is crisp and lends itself to the clusters of people in the outdoor spaces. It’s bonfire weather. Time for stories and drinking and laughing too loud. I am not sure when I will be ready to navigate that part of the world again. For now I am to be a masked observer keeping my distance. I am reminded though as I walk that this weather these rolling hills this season would have given old mom joy. She would have been smiling all day.

Wytheville Virginia

Road trip

So we are taking a road trip mostly because we have been two places since the pandemic started my partner nts and his parents. In the past four years we have planned about four vacations and when each approached someone fell or got sick or had some other emergency. This time we planned small one night only. We managed to get to the highway so lets call it a success so far.

Caregiving complicates travel. There is the need for caregivers and emergency backups and in our case we must choose to pack up three dogs and all the gear they need or also find care for them. Traveling with dogs is like travelling with toddlers there own beds special food and potty stops. We always are happy to have them with us but they can make things a little complicated.

We are at a good place at the moment everyone is healthy and maintaining somdewpite the virus we are venturing out. Making time to do something we enjoy. It’s ironic that for most when they retire and can finally start traveling and pursuing hobbies it is also most likely to be the time they are care giving for parents.

We are headed to west Virginia to look for pottery and explore some back roads here’s hoping for a day full of normalcy and no excitement that we don’t choose.

Food for thought

The biggest challenge I face and other folks say the same thing when caring for elderly is finding food that my parents like and will eat that is easy to prepare, nutritious and fast. My father does not cook to speak of . In recent months I have taught him to make macaroni and like all things he get’s obsessed so he makes 1.5 cups ( exactly) of macaroni a couple of times of week = to this he can add mayonnaise, celery, relish and have salad- he can add frozen meatballs and sauce and have spaghetti. I do not encourage him to cook any meat from raw – as he either burns it or eats it raw. In fact I try to keep it as simple as possible 3 ingredients 5 tops. Once he decides he likes something he begins using it in everything. One night he told me he had honey mustard dressing ( also a favorite) on pasta. That’s it. I could see it in my head , elbow macaroni swimming in a neon yellow dressing. Scary.

Dad will likely try anything I take him, frozen bowls meals with multiple ingredients are well rounded. I have stopped worrying about salt and sugar in these meals. He is nearly 90. Screw it be brave dad eat all that processed food you want. I take a meal 2x a week and often take something I have made to freeze as well so there are choices for healthier versions. I have switched to turkey for him over ground beef as he get’s gout. I precook turkey burgers and bag them one at a time in a ziploc for him so all he has to do is heat them up. I make turkey meatballs with a faux white sauce ( cream of chicken low sodium and milk) and put them over egg noodles. I make a sweet and sour chicken and rice for him as well. But mom – mom is a challenge. She was eating the meals I prepared and froze now she has started to say no to those. She will however eat whatever I bring on the days I am there and I eat with her.

EVERY meal she has the following macaroni salad, loaded with salad dressing, and mayonnaise ( I mix the two ) , eggs, celery, and sometimes small bits of pickle or carrot. She eats 4 deviled eggs. YES 4 . She will eat a protein if I take it albeit small amounts, hamburger patties, chicken thighs ( broiled simply with thyme) , sometimes chicken and noodles and she always has a slice of lemon cake. This must be Muffin Mam lemon cream cake. She will eat but tells me it is not good any other brand including home made.

So two times a week I cram in a lot of fat and calories. The downside is that I have to eat with them and if I ever see deviled eggs or macaroni salad again I might scream. I am so tired of it. I remember when kids are young they go through these phases of only eating white food, or only eating hot dogs, and you just go with it. If they are eating, gaining weight and healthy the doctors say continue to encourage new foods, but don’t let that be the battle of the day. For meals that I am not there she eats bologna, chicken sandwiches- sometimes with lettuce, sometimes with left over salad I have brought, or a bowl of soup. She maintains her weight but never gains and I know sometimes drops a pound or two a risk for her as she weighs less than 90 lbs.

I was arguing with her but now I have moved to the bargaining phase. Eat my lunch and you can have bologna for dinner. Or eat the bologna but also have a single serving cup of green beans. For breakfast she eats half a banana and a bowl of cinnamon life cereal. EVERY day. I encourage her to eat sandwiches only one meal then eat soup or something else for the other meal. Sometimes it works, sometimes it does not.

For most of us this repeated diet would drive us nuts but I have learned that that’s exactly what she wants. She wants things to be stable in her world. She wants her world to be exactly as she expects it any change any upset is what causes her to spin into the realm of pacing and mumbling. Change is the enemy. Having an appointment on Friday is sure to make her fret and be frozen with fear from Monday on.

For example when I arrive with groceries she always says the same thing

1. Too much food ( it’s never too much) it will waste.
2. What do I do. ( help me put it away mom)
3. What do we eat on? ( Paper plates are fine mom)
4. When meal is over what do we do? ( Let’s get your apron and do the dishes mom)
5. During the meal if she is having a good day she sits, if not she eats standing up rocking.

It is the exact same thing every time. Every time I reassure her, every time I direct her. Set the table, get the silverware, get the plates, clear the table, place this in refrigerator. Yes I could do all these things, but I think it’s important to keep her busy even if that means telling her step by step what to do.

Normalcy, routine, is our friend. Change is the enemy. In this world we are in right now where things change every minute, that’s much harder to fill than it ever was before.

Todays grocery list –

Pudding cups Tapioca please ( though it took 5 minutes to get that word- you know the lumpy kind of pudding)

Bananas ( no bruised ones please)

Dressing – for lettuce ( you don’t have lettuce ) Oh then get lettuce

And Cake. Lemon Cake.

What tips or tricks are other’s using to get their parents to eat?

My preferred lunch – salad – NOT with macaroni or mayonnaise.

Added bonus for quick deviled eggs never boil them again – Use your instant pot. I set it on low pressure, 12 – 13 minutes place 6 eggs on trivet with water covering the bottom. Lock and load. I never have a hard time pealing them, I rarely have one crack. I always make 2 extra ( more than I want for deviled eggs) I use the whites cooked in salad, and the extra yolks to make the filling for the deviled eggs. That way I always have extra ‘goop’ to fill he eggs well and never have that one egg with a quarter of a dollop.

And the rain

We have had unprecedented rainfall this year leaving our lawns ever growing but too muddy to mow. For the first time in months our temperatures are long sleeve worthy. Mom does not do temperature shifts well. This is common with the elderly it’s like there thermostats don’t work. Always too hot or too cold for her while dad seems almost insensitive to heat and has to be reminded . It is a battle of the thermostat for sure. For now though I am banking on using the break in the rain as something to be thankful for . A focal point to help mom skip the worry groove in her record . I wonder if others fight these same things getting their parents to move off of whatever the current obsession is ?

Finally a break in the rain

I

Sally is here

Today has been a strange day with rain most of the day now that I am afloat with no normal schedule i find days of unending rain leave me feeling particularly at odds. For one thing weather is a constant worry for mom. She worries the power will go out that their home will flood and that we will all run off the road in a raging storm. Anxiety is the only constant in her life. She was a woman of control in the past she planned everything bad weather coming she filled milk jugs with water, flashlights stationed at every bed and seat,frozen water and food and meals galore prepared. During hurricanes they cut and number plywood to install over windows and not stick lay in the two acres of yard. Now my father has neither the motivation or cognitive skills and mom is trapped in her feeling something should be done but not a lye what that is. I liken it to this perpetual feeling that the other shoe will drop but not knowing where that shoe even is. So she stays in this constant state of panic.

I don’t know how to help her except to remind her that this is just a remnant of a storm and will soon pass. I promise her tomorrow will be better and say I am sorry you are feeling so worried. She repeats over and over I don’t know what to do. If you ask her about what ,she says “every thing”. I can not imagine what it is like to live in her mind. Meanwhile dad grows belligerent and will go outside in bad weather just because she has

Asked him not too. It’s his way like a child.

These moments are frustrating I don’t have answers I find my patience with the cyclic behavior grows thin and I quietly reassure her one more time then make an excuse to get off the phone. I wish the rain was a comfort to her just breathe and listen to the rain. Tomorrow is another day.

If you are in the south and in Hurricane season you can only do so much as nature has taught us especially this year that we are at her mercy. That is much like the disease that ravages my moms brain I am at it’s mercy and so is she

The crazy train

This is suppose to be a way for me to share caring for my parents and navigating my increasingly crazy world. Crazy because we all are in crazy town now Covid 19 the current political climate and for me the added adventure of a parent with dementia, a newly retired husband and getting laid off. It could be the quietest time in ,pay life no where to go no work stress and instead it’s crazy town USA .

In the last 4 years my life has changed more than it has in most of my adult life and coping with it has been the biggest challenge of my life. Maybe the mistakes I have made will help someone else or maybe they will give you a laugh or a cry .

The quote below is random generated by WordPress and yet its appropriate . Welcome.

Good company in a journey makes the way seem shorter. — Izaak Walton