Mulling, musing, pondering, and provoking…

My blog posts have been colored by what is going on around me. Well, I am still musing, which was the point of this blog when I started it. I wanted to share nuggets of ideas I came across while I mused over all sorts of subjects. Working my way through issues. And it is interesting to see how I have grown and changed, as I have shared my thoughts. Most of what I reflect on is where I stand with God. And where I stand politically. What is on my mind as I go through my days. Of course, recently, I have experienced all the stuff one does when you take on a parent with a disability. Alzheimer’s is probably the worst disability I can think of, because it makes the mind run astray. And every moment is a crap shoot. And to be honest, it colors every aspect of your life. I can feel God, I can see God, but I am not next to God. Instead, I have my mom and all the issues surrounding her health and wellbeing, how she is each day, coloring every, single moment, and every, single aspect of my life. And that is the plight of caregiving. You subsume into the other person, quite often losing your own identity.

Today, on some boards I am on for Alzheimer’s and caregivers, some one posted in very large letters, “I QUIT.” So many of us rushed in, ensuring the poster was okay and not in danger of harming themselves. Suicide among caregivers is so very common. And once we were reassured she was okay, just venting, we all jumped in to give her encouragement. It is nice to be on boards where you can vent and chat and no one judges you. Today I saw a post where a woman said, “Thank you for letting me join this group. I know my sister is not in here, it is private, and I can find some time and space for me. And I can say what I need to say, when I need to say it.” Wow. For some of us, we are hot water kettles on the boil, almost ready to spit out that steaming water. And we find it hard to thank God in those moments; the moments when we need to just explode. And to an outsider, it makes no sense.

We all laugh at the platitudes given to caregivers. “You are such an amazing daughter/son” “You may not get a lot of thanks here, but you will in heaven” “You are such an angel” and on and on. Trust me. None of us are angels and none of us feel like good kids when we have just had shouting matches with our parents, who are having a bad day. We feel like crap. Like the worst kid, ever. And we desperately want someone else to do this. We really do. We want to run away and hide. Some days, we just want to stay in bed and rest. We want to sleep. And, when we are really candid, we want this entire Alzheimer’s journey to be over. And then the guilt sets in, because that means we want our parents to die. We don’t really. We want our parents back the way we knew them. And we want Alzheimer’s to go away.

Some days, I just want quiet solitude. My mom has this annoying habit of inserting herself into everything. She flips through our mail. She reads things left on countertops (I am better about putting things away these days). She inserts herself into conversations. Today she was so nonsensical. Her reactions were so off. She was laughing at things you should cry over. And then we had to repeat every 2 minutes. She looks in my room, and in my closet, ostensibly looking for me. If I am in my master bathroom too long, she calls after me and walks in, wondering where I am. (Usually I am hiding, sneaking in a game of Words with Friends). And she has this especially annoying habit of not wanting to go to bed until I go to bed. Tonight she was literally snoring on the couch. I watched her. She was not watching the program I wanted to see. And when she woke up and I told her she should go to bed, she said she wasn’t tired. I told her she had just woken up from a 10-minute nap, complete with snoring. She harrumphed and ignored me. Finally, I stood up and started my bedtime routine with preparing my vitamins and supplements (I know if I did not religiously take them, I could not do this much longer). She stands up and says she needs to take her pills and go to bed. But then she dilly-dallys, watching me, to be sure she isn’t missing anything. *sigh* I get it; I do. I am her anchor. But I just needed some downtime. Alone. In the night. Watching a show I wanted to see. She harrumphed and complained, but then went to bed, saying how tired she was. And then she grabbed me, hugged me, and said, “I love you. I don’t know what I would do without you. Thank you for taking care of me.” And the guilt came crashing down on my shoulders. Again.

So what I see tonight is that caregivers subsume all their needs and replace them with all the necessities of caregiving itself. And this leads to an emptiness. And extreme exhaustion, emotionally, physically, and mentally. Because when you allow something or someone else to replace your core self, you have nothing. You become empty, in the sense that not much of you is left. It is why most caregivers become chronically ill, chronically sleep deprived, chronically lonely. Because this is really an isolating illness. Family members do not understand. Friends lose interest. Jobs are compromised. Marriages are strained. Your own kids don’t get it – they just see your parent taking over all of their parent. We are the sandwiched generation, and we need help. A lot of it. Because Alzheimer’s is growing. Rapidly. The statistics for our future are alarming. There are going to be so many sandwiched families, and it is going to drastically affect our culture.

I don’t have any answers. I am mulling and musing, pondering, and provoking thought – I hope. And I am thankful for the assistance that is coming our way through some amazing organizations and through the generosity of grants. And I know there will be help and that makes my burn-out less horrific to bear, and easier to bounce back from. My kids are pretty much launched or in the process of launching. My grandkids are still young enough that it is not affecting them too much. I have friends who I know have got my back. Others have walked away or distanced themselves, and that is okay, too. One day, my mom will have completed her Alzheimer’s journey and I will deeply mourn her absence. But I will also, guiltily be relieved. It is no way to age. It is a burden on her, because in her lucid moments (which have become fewer and fewer) she knows what is going on and will slap her head and say she hates her mind and wants to die. And I don’t want that for my mom. I want her to have a beautiful quality of life. I am just not sure how we will make it happen, and so we take the days moment by moment. It is all we can do. I am pretty excited for the calvary to arrive, I have to admit. Respite care allows me to have a break, if we can get mom to accept someone in my place. We are praying it works out for a family member to be my respite provider, but there are others I am going to interview, too. And I am excitedly dreaming of coffee/lunch with friends, and just being free to do what I want to do. Get a haircut. Go to the shooting range with my girlfriends. Grocery shopping alone (how sad is that??? Ha-Ha). My own schedule. Even if it is just me and my hubby, out for dinner alone together. *sigh* And there goes the guilt. It’s a cycle-thing. We just go moment to moment and hang on.

Redirect, distract, diffuse…and it worked.

So yesterday (and today) was gloriously sunny. The winds came up late in the day and haven’t stopped, yet. It was loud, overnight, for me. But mom, she slept through it all. I woke at 5am and decided that I was not getting up. I woke at 8am, feeling guilty. Mom had been up for hours, wandering through the house, all quiet and dark. I got her some coffee and waffles, and she promptly started snoring on the couch. She cannot seem to stay awake. And her conversations are disjointed today. She is inappropriately laughing, and answering questions with answers that are nonsensical. She seems very confused. *sigh*

Yesterday was a rough, rough day for mom. She was approved for a grant, for respite care. So blessed, because it gives me a break. But she does not understand why I need someone to watch her, when I am away. She says she feels like a baby who needs a sitter. When I ask her where she lives, what day it is, if she has eaten today, or what year it is, she cannot answer me. She just looks at me blankly, and then says something flippant, to distract from the fact she cannot answer the question. *sigh* They were in our home to evaluate her needs, and to be sure we understood how the respite care program worked. And she sat there, on the couch, totally fuming. And she had to re-introduce herself twice to the lovely woman who had come to the house. Poor mom. She had no idea that the woman had been here for about an hour. After she left, mom was just so testy. She was causing us to bang heads, because she was lashing out, and had no idea why. So, I decided to distract my mom. We had to do some banking, and then I took her for a lovely drive up into the local mountains. It was so beautiful…the sun makes the snow glisten. We could not get all the way to where I wanted to be, so I could show her the views from the mountaintop, because we had an avalanche last week and the roads where closed. But we got close. And she was marveling at the views. So many beautiful scenes in front of us. Lovely farms and homes in idyllic settings. We are so blessed to live here.

Mom loves thrift shops. She used to volunteer at one that was run by her Church, many years ago. She was the one who sorted everything and she had first crack at the merchandise. And she found some amazing pieces. She knows a bargain when she sees one. And so, after our drive through the mountains, and because it was still early in the day, we went to her favorite thrift shop, called “Thrifter’s Rock.” And it did not disappoint. She found some great deals. She got a new purse, some jewelry, and lovely tops. She even bought a shirt for my husband (she just loves him). And she was overjoyed and smiling. The stress of the day was left behind.

Today, well, today is not good. A forgetting day. She is having a hard time communicating. And she keeps sleeping. I think it is fallout from the stress of being upset yesterday. She cannot verbalize why she is feeling what she is feeling. But, I learned I can distract and redirect and diffuse. I learned that those methods actually work. And you know what? We had fun and I made some memories with mom that I will keep. Bad day, yes. But it turned into a win-win. So blessed. A hard journey, yes, but there are little nuggets along the way. Now I need to wake her up and get her ready for today’s doctor’s appointment. LOL.

 

Almost “time to fly…”

I’ve been absent lately. There have been a lot of things going on around here. The weather has been fun…rain…snow….slush…sun….and repeat. Today was rain and snow together, until the snow beat out the rain. At times, we have been experiencing near to white-out conditions, and then it will just stop. As I write this, the sun is gloriously shining and the snow is dripping off the roof. We are nearing to Spring, but it has not sprung here, yet!! My youngest son has been busy working on his fire fighting career and training; my oldest son got a promotion and then both he and his kids have had the flu (God, in His mercy, allowed my daughter-in-law to avoid the newest strain of Flu B, so she could take care of all of them). And my middle son and his wife just announced they are expecting baby #4 in October, and they are off on a fun vacation for two weeks, driving hours upon hours with their three little ones. We are over-the-moon-excited for our new grand baby! They are one of life’s greatest treasures. And their growing family brings us such joy. Sunshine, snow, and family…busy days for this musing mom!

And I realized that very soon, I will have an empty nest. My youngest will soon be independent enough to have his own place. My mom’s health is steadily declining and I do not see many years more with her. And our dog and cat are also aging quickly. They both sleep most of the day away, right next to mom. As I looked around, I realized I needed to find something meaningful to occupy my mind, to give me purpose. How many of us who have opted to stay home to mother, have come to the end of our full-time mothering, and realized we had nothing to do, nothing that meant anything to the world around us? Raising kids is the single, most important task I have ever undertaken. It is the single best decision I ever made, to stay home and raise my kids. Every single one of them makes me proud of the adults they have become. Such good people. My heart swells with pride. And now that my baby is almost 20 years old, what next??

As I looked around at what I saw happening to my town, my borough (county), state, and country, I realized I still have a lot to offer. I can help out with what I feel is important. I can work with legislators at the State level. I can attend Town Hall meetings. I can meet people active in our borough and mayors of the towns around me. I can offer to help at events, with different groups, around my town. I can pay attention to legislation at all levels. Have you ever gone to a site like LegiScan LLC and looked over legislation pending in your state? The resources from that one site will blow your mind. You can see how all the legislators in your state have voted, who has financially supported them, who the lobbyists are on bills pending, the status of bills, how long they’ve been in committee, etc. It is a free treasure trove. Their mantra is “Bringing People to the Process.” And I don’t think many of us understand the legislative process in either the House or the Senate, at any level of government. It is certainly eye-opening. Oh, and it is for every state!!

And so I have something fun to do. I am volunteering with a political group and I am about to be trained to volunteer as a surgical assistant at our local shelter. I am out in my community, working with the movements of our government as much as I can. I am becoming more aware of what is happening. I am meeting others who want to make a difference. When I attend events and have amazing discussions, I am re-invigorated and get energized to do more. It is giving me purpose. I am narrowing down how I would like to focus my energies, sort of setting myself up for future projects. And I am excited that I live where I do; a place where I can affect change. I am living around more “like thinkers,” rather than being in the minority (for the most part), which is so different from the other two states in which we lived. We are part of that silent majority, that is slowly waking up – a sleeping giant, if you will. And it is an exciting time to be active in what goes on in my town, state, and country. Empty nest? Soon enough. For now, I am digging in and doing things to keep me busy!! And it keeps a smile on my face. We all need to embrace working to make our local towns, our states, and our country a place we can find pride in, and a safe place to leave to our children and grandchildren. If we stop being silent and allowing a small minority to change the fabric of our nation, we can get this country back to a place where we don’t have to live in fear or be afraid to speak out. Get out into your communities, get involved. Use your talents to make the world we live in a better place! We can do this!!!

 

“No more gas left in the tank…”

I am blessed with friends. I truly am. And they are wonderful to hang around with. When I took my mom in, I honestly did not see it would be 24/7 and hanging with friends would become something special. That I would have to find babysitters, for an 88-year-old-woman. That I would never, ever be alone (sometimes I get followed to the bathroom, or if I am out of sight for too long, she comes looking for me. And sometimes it is rather uncomfortable to be found. LOL). And sometimes I feel like some of my friendships are strained. Because not everyone wants to hang out with my mom all the time. Because I cannot generate things like, “Hey, let’s go to lunch!” on the spur of the moment because I don’t get free moments like that. Or to try to plan a lunch out ahead of time, with no reliable respite care. It is not fair to drag my mom to all the events with my friends. And as this disease progresses, I am going to get even less able to be spontaneous, or to get away for a few hours. I haven’t seen a dear friend in more than 2 months. And I am sure it is because I am just not available like I once was. I come with baggage – attachments – strings. And I know it is hard. I truly do.

One of the hard things is that even when things work out and I am able to get away, the return is stressful. When I am gone an hour, my mom thinks it was all day. When we go together and run errands, after we are home she is very cranky. She gets snippy and is so tired. And she does not recall a moment of our day out together. Today, we went to breakfast with my patient daughter-in-law and granddaughter. Our youngest son met us there. Then we went shopping. And on the way back, hubby met us so we could look at gardening supplies. We ended up finding a rug for our bedroom. It took much decision making and discussion in the store. When we got home, I showed my mom the new rug, all laid out in our room. She went on and on about what a lovely rug it was and what a surprise I got a new rug. She had no memory of the day we had spent together. Not even how she hung out with her great-granddaughter, who took her by the hand, and said, “C’mon, buddy…” as they walked through the shop.

And it makes me sad. Because we had a great time. She remembers none of it, and she is tired and cranky. And it makes each subsequent journey that much more difficult. And the deeper into this she goes, the more isolated my life becomes. I have read so many articles and blogs by other caregivers who lament the loss of their own lives. I really did not think it through, when I invited mom to come here. I really didn’t. I don’t think any of us who do this truly understands it, until we are in the trenches of it. Today mom lost her pajamas. I had put them under her pillow when we made her bed. She was walking around the house, in her shirt and undies, looking for them. After I went to investigate, she is pulling her summer jammies out of a drawer, saying, “Oh here they are!” And I told her those were her summer pj’s..and I looked and found her jammies on the floor in the back of her closet. Next to the Depends bag, which she fights me on every night. Anyway, when I pulled them out, she pounds her head and says, “The sooner I leave this life, the better. I am not good for anything. I hate my head. I feel so stupid.” And as she ranted away, pounding her head, I just sighed. I have tried comforting her when she gets like this, but she rebels and stiffens and doesn’t want it. So I have learned to leave her alone while she futzes around in her room, slamming drawers and closet doors.

The last thing I want mom to feel is that she needs to die. Ugh. And I get her frustration. Because if she knew the impact of her disease on the lives of everyone around her, she would totally hate it, as if she doesn’t hate Alzheimer’s already. But I know she would hate what it is doing to my life. I feel bad that I don’t reach out more, and try to get time with others, to enjoy being more social. Honestly, some days if I can make 3 meals she is satisfied with, take care of my husband and son, remember to feed the dog and the cat, and get myself to bed at a decent hour, I have no more gas left in the tank. I am done.

My dream is to stay at the hotel above. It is called the Alyeska Resort and it is in Girdwood, Alaska along the amazing Alyeska ski slopes. The views are just incredible – summer or winter. My dream is to go there – perhaps with my daughter-law – with no kids, no mom, no husbands, and just books and some wine. I would look out the window, maybe walk the trails, and hang out in the amazing lobby (picture below) and forget all about Alzheimer’s and stress and being lonely and sort of needy…and just breathe deeply, and dive into a good book that is in my ever-growing TBR pile. Someday. Someday. Not today or tomorrow, but someday. I hope my friends will wait for me. And still seek me out, even if I am hiding away in my house, because I cannot get away.