Two years later part 2

When I left off last post, I was heading for thyroid surgery and mom was in the hospital and heading for a nursing home.

There was no damage done when she fell in the bathroom, so the next day she was transported to the nursing home she is currently in… a beautiful place that looks more like a hotel than a nursing home. We had picked it out months before as the place mom AND dad would go while I was recovering from surgery, and fortunately there was space for her. (Dad had improved so much that there was no need for him to go in during my surgery)

Mom had maybe one or two good days, and then the walls caved in. She became angry, weepy, irritable, unpleasant. Dad and I were taking turns staying with her most of the day to try to get her acclimated. It wound up being torture for us all.

Mom’s physical condition had deteriorated at home because of the injuries from falls – two compression fractures and a hairline crack in her clavicle – so she was not walking much and standing was reduced. At the nursing home, they tried using a sit to stand lift to get her to the toilet, but they found that she did not have the strength in her legs for the lift, or the stability to maintain a sitting position on the toilet. She had to use a bed-pan. This caused all sorts of grief. Did I mention the word torture?

We were constantly bombarded by requests to go home, and with stories of how the nurses and the aides hated her and were purposely leaving her places where she could not get help. There were things that frustrated all of us, but I was fairly sure that she was not left in the main lounge all night in her wheel chair (because the nurse wanted to teach her a lesson, according to mom). Put dementia with a very low self-esteem and depression and anxiety, and paranoia is the result.

My husband and I planned on going away for a night or two before my surgery, so I could relax. The day I came in to say goodbye to mom, she would not speak to me. I went into surgery the day after our mini vacation. I had one night in the hospital, then rested a couple of days at home. It was amazing how quickly I recovered from surgery, so I went in to see mom. With sutures and drain hanging from my neck, I went into her room. It did not go well. She thought she should be coming home, that we should hire people to care for her round the clock there (which is what would have been required. I don’t know how I managed for so long) and that we were terrible for leaving her in that place, selfish, uncaring. She threatened suicide.

Oh, yes, the suicide threats. “Give me a safety pin so I can slit my wrists” was a common theme. She also tried to reach for the trash can liner to put over her head, according to staff. This went on for at least a month. We couldn’t convince her that she was in the best nursing home in the area. Dad and I were getting worn out.

Part three next time.

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Two years later…

I certainly did not plan to have a 2 year hiatus from this blog. My plan was to share the trials and tribulations of my journey, but it turned out to be so emotionally and physically stressful that there was no way I could put it to paper.

Two years ago, things were reaching a head. My dad was falling almost every day, his speech was almost unintelligible, and he was having trouble using eating utensils. My mom was becoming increasingly demanding, and had woken up from dreams several times convinced that she was in the garage and needed to get out – and falling when she attempted to get out of bed.

Good things happened – the discontinuation of one of dad’s medicines made a miracle happen: he no longer fell, his speech improved dramatically, and he could feed himself again properly. Bad things happened – mom fell and fractured another vertebra, and that, combined with a fractured collarbone (hairline) meant she could not walk with her walker. I had to physically help her transfer, and her pain increased.

A year and a half ago, I finally scheduled surgery to have my thyroid goiter out. The plan was to have my parents stay at a nursing home while I recovered, but by the time it was one month before my surgery, dad was doing better, and mom… was not. I was past exhausted. One day, while I was helping mom in the bathroom, she slowly toppled over and wound up on the floor, head first. It was an extremely slow fall, as she was holding on to her wheel chair arms. We decided to call for emergency help. She went to the emergency room, and while she was there, I walked up to the nurses station and said “I can’t do this any more” and we arranged to have her go into the nursing home early, after she was checked out at the hospital.

Thus began a new misery, but welcome relief.

Good day, sunshine

Yesterday was an amazing day. The sun was shining. Mom was smiling…. this happens so infrequently, it’s like a red-letter day, worthy of note.

I wish I could find out why this day occurred, and use that recipe to make it recur. This wasn’t a “mom’s back” day; her good mood was unlike any that I can remember. She watched basketball, for Pete’s sake – and cheered for one of the teams as if she was a high school student cheering for her school’s athletes. In fact, this was a high school game, and she described her feeling as being reminiscent of attending a game in her youth.

Her good mood continued into and through dinner; a celebration of a birthday in our family, and a celebration of mom actually interacting with all of us in a positive way. Usually she’s looking for the cats or distracted by her pain or something she doesn’t like about the dinner offering, but last night? It was a real family dinner.

Unfortunately, the swing upward often has a precipitous drop – when she reminds herself of everything she can no longer do. She had vivid dreams last night, and woke me at midnight telling me that she’d just had a fight with dad (sleeping deeply next to her) and that she needed to get into her night-clothes (she was already dressed for bed). We made a trip to the bathroom to change the depends and get reoriented. This morning, she was crying because she feels like the dreams meant something and she feels guilty.

But I can still bask in the yesterday feeling, even though today there are clouds in the sky and in my mother’s mood. Maybe today will retain some of the leftovers from yesterday. I have hope.

Not the same…

as caring for a child.

When I was considering taking my parents into my home, my brother grilled me about whether or not I knew what I was getting into. He and his wife had been caring for them for a couple of months, and it was taking a toll on them (particularly his wife) because of how depressed and often cantankerous they were. I felt as if he was saying I was not capable of doing it, like he was telling me that I hadn’t thought it through. Okay, I hadn’t, really.

I thought that I would just handle it like I handled having a child, figure things out as I went along. I did make plans and thought through the logistics of having handicapped people in the house. I thought through hand-rails and toilet seats. I thought through having clear pathways, making healthy meals, traveling to doctors’ appointments.

I didn’t have a way to think about what a psychological and physical toll it would take on my mind and body. Yes, I bolstered myself up by thinking of the positives of having mom and dad here: I could get to know my parents a little better; my adult children would see a good example of responsibility; the kids and their grandparents could have a stronger bond; I would have a purpose etc. I also felt that having my parents here would make them far happier than a nursing home or assisted living place would (as it turns out, assisted living is out of the question) and it would ease their transition from living independently to having care. Oh, and they could still have their cats (not all 8, but we did take in 5).

I thought it would be difficult in the same way having a child is when you have your first one – it takes time to adjust, but then you get into a routine and it’s easier. It’s not.

When you have a baby, you have the expectation and the joy of knowing and watching them grow. They grow more and more capable as the months go on (assuming they are healthy). In general, you are young and have the energy to care for them. Then there are the people you meet who also have children. You bring your children together to play with one another, or you bring your baby to meetings with other mothers, and a shared experience binds you together. Shared problems, shared joy, makes the problems less worrisome and the joys multiply.

It’s not the same with elderly parents. The expectation, the reality, is that they will become more dependent and less capable as time goes on. Watching this happen is a continual grief process. Dealing with this process creates the need for more physical energy, more psychological fortitude, at an age when you are no longer as young and agile… and you’re seeing the future in your parents’ situation. Exhaustion, depression, anxiety about your own future – all combine and weigh you down.

Add to this the fact that, unlike with small children, parents are not portable. You need to go to the store? You have a doctor’s appointment? You’d like to have lunch with another person? If your parents are in the condition mine are, it takes planning. It takes outside caregivers, because taking them with you would require getting them out the door (oxygen, walkers, extra Depends) and down the steps and in the car. These are major operations that cause them pain and wear them out.

There are no “play groups”, either. Finding support groups is not easy, because we are all so busy and stressed out that no one can come… or find one another…

Not the same. My brother was right to grill me. I don’t know if I would have made a different decision knowing what I know now. Perhaps. Perhaps not. Now is not the time to be entertaining a what-if, that much I know.

It’s my fault you’re in pain.

Mom has a lot of guilt. It takes so little to cause her to feel it.

I’m exhausted today – both mom and dad had physical therapy yesterday morning – dad had balance therapy, mom had water therapy, close times, so I brought them at the same time. Dad had a doctor’s appointment in the afternoon that took a while.

Dad’s therapy does not tire me – I bring him there, he does all the work. Mom’s does wear me out. I have to help her into her suit, and get her a shower and dressed afterward. The bathroom/shower we use is handicap equipped, but there isn’t a lot of room for two people if one is in a wheel chair. The shower is very small. I get really sweaty and wet helping with the cleaning and dressing process.

I’m also in pain. Lifting the wheel chair and walker in and out of the car several times can do that to me. I’m also pretty burned out, to be frank.

As I was getting mom in bed tonight, she’s in pain and doing her usual song-and-dance about needing to get in to see “someone” who can tell her why her buttocks and leg have pain. She began to cry while she had her pill bottle in her hand ready to take her PM meds and when she reached for the tissue the bottle slipped from her hands and… yes, I yelped, and yes I sighed. I admit it. Picking up pills off the floor was not on the top of my list of favorite things to do. This made mom cry more.

I told her that I’m in pain and I sound a little grumpy and it’s more to do with me than her. “It’s my fault you’re in pain” she wailed. “Well,” I told her, “I was in pain before you came here. I had back trouble before you moved in. I even stayed up too late before you came here. I’m afraid you can’t take credit for all my pain and trouble.” True, doing more caused some of my pain today, but her fault? Nope.

It’s difficult seeing my mother so different from she was when I was growing up. Her memory and comprehension have suffered, and she struggles with days and time of day, seasons… but this guilt is familiar. Mom always took on the responsibility and guilt for every scrape, bump, fall, hurt feeling… you name it. It’s just multiplied now.

Dad, on the other hand has become easier to live with, which is saying a lot.

Things are what they are now. I can’t control mom’s guilt, I can only to my best not to encourage it. The only person I can potentially control? Me. Darn. I’ve stayed up too late again…

Random thoughts of a tired person

Mom has been trying to be more upbeat. I can tell she’s trying. She doesn’t put down the aides, or complain very much about them, and I do appreciate that. I feel bad, because I am having a hard time being upbeat myself. She usually cries in the evenings, and I can tell it’s a struggle for her at that time of day.

I told dad that I need a break, some time away from mom, and that he did, too. He won’t admit it, but I know he does. Mom’s memory and comprehension are just high enough that she can follow simple plots, and just low enough to make it difficult to explain what she doesn’t understand. Dad can’t speak well, and gets frustrated trying to do the explaining… so he winds up yelling, she gets her feelings hurt…

I feel like if I could just have some real time to myself, where I knew they were taken care of and I was not on call, I could pull myself up and be the caregiver I want to be. I love my parents.

Geez, I’m a mess. I have clutter everywhere except for my parents’ areas (and even their areas have some boxes and so forth that need storage). There is a physical therapist who will come in and evaluate the living space to give advice on how to make it safer for dad (he falls frequently) but I wonder what they’ll say about my house.

Tomorrow is an early day – mom has water therapy at 9 (!) so we need to GET there by about 8:40 am. This means an 8:15 departure time. Dad will be going also, as he has a physical therapy appointment at 9:45 am in the same building. Getting mom dressed for the pool and then showered and redressed after the pool is exhausting. I’m not looking forward to it, but I’ll get through it. Next week we have another day like tomorrow. The week after, something similar, but no pool. Managing appointments is not my strong suit.

Today, I cleaned my own bathroom shower stall out a little. It is not being used because there is a leak somewhere, and stuff had accumulated in it. I’d been trying to remove the silicone caulking/grout, because I think the leak is in that area; but I’m afraid it may be in the man-made granite floor – a crack perhaps. The shower floor is not terribly attractive at this point in its life, and I wish I could just tell someone to take it out.

This afternoon I visited Sam’s Club, Meijer, and Walmart in 3 hours to do necessary shopping. I still need some things. I’m tired of planning meals. I’m tired of cleaning up. I guess you could say I’m just plain tired.

Good night!

Ups and downs

Mom has had some good days in the past couple of weeks. (I have to mention this, because lately I’m feeling on the negative side of things.) She went to church last Sunday, and even stayed for the coffee hour, listening to and visiting with a couple of the older ladies there. Dad did not go, and I think that actually made things better (although mom was working up to being angry with him for choosing to stay home when we were on the trip to church). I think it’s funny that my mom thought the other ladies were all older than she – all but one was considerably younger, and that one was only a couple of years older.

My husband has been working on the muscle on her right leg when it knots up, and that seems to help – both physically as well as psychologically. I’ve been asking for help in lifting, for the most part, because my back was in sad shape for many weeks.

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