Tag Archive | mental-health

Balancing Love, Faith, and Caregiving in the World of Dementia

Feb3

Yesterday, my daughter and I created a memory that will forever hold a special place in our hearts. After carefully measuring twice, we ordered her beautiful wedding gown. Then came the exciting part: finding the perfect pair of shoes to match! With so many stunning options to choose from, she finally discovered ‘The One’ – an absolutely gorgeous stiletto sandal. It was quite a surprise, considering her usually conservative style, but I couldn’t be happier and more excited for her.

The 4-inch heels will certainly require some practice, as she rarely wears anything higher than a sensible heel. But I’m sure she’ll rock them on her special day! Even though the dress and heels were quite inexpensive, they are simply stunning. I would have gladly spent more, but she loves the dress, and that’s what matters most.

She truly deserves the best, but being the wise woman she is, she’s opting for a conservative wedding and reception, preferring to invest in house upgrades instead.

Her dad was with us the whole time, laughing along as we browsed and letting out ewwws and awwws together. But when he saw the shoes she chose, his jaw dropped in surprise! It was really special to see him enjoy the planning process as much as we were. Unfortunately, his dementia is progressing, and it’s hard not to worry about the future. I can’t help but wonder if he’ll be able to walk her down the aisle when the big day arrives. It’s always been a dream they’ve shared. If he’s unable to, her brother will be there to step in. No matter what happens, I know everything will be okay. I just want her special day to be perfect and filled with love.

To ensure the wedding and reception go smoothly, we’re keeping the date, times, and location under wraps. That way, there won’t be any unexpected guests, and only those who are invited will know the details. After all, it’s important for their day to be intimate and surrounded by the people they love. I’m excited to see them tie the knot in a beautiful Catholic sacramental wedding, as this is an important part of their faith and values.

My beloved’s dementia is progressing, and it’s been challenging for both of us. Recently, he caught a nasty stomach bug that was particularly difficult for him to handle. Unfortunately, he couldn’t make it to the bathroom in time, which resulted in soiled bedsheets and clothing. It’s heartbreaking to see him struggle with tasks that used to come so easily. He tried his best to clean up, but ultimately let me help him. As a mother, dealing with bodily messes doesn’t faze me, but I know it can be humiliating and traumatizing for him.

Despite his declining memory, he still has some problem-solving skills and a strong desire to contribute. Even with a bad hip, he managed to throw a bag of pellets on a shovel and dragged it into the house. I was so proud of him and even clapped at his accomplishment! It was quite a surprise because he usually shook his head when he saw me using a sled, wheelbarrow, or shovel to move heavy things.

He continues to experience delusions and hallucinations. Just the other day, he told me he had a friendly spider sitting on his lap, visiting with him. I played along, thankful that it was a friendly spider rather than a terrifying one. His delusions often involve scenes from the likes of Tom Clancy novels, which can be quite amusing at times.

His memory issues are also progressing. He sometimes forgets who our dogs, Kaya and Starfire, are, referring to them as ‘hes’ instead of ‘shes’ and asking if we can keep them since they are such nice dogs. 🙂 On one occasion, he needed help putting on their collars as he’d forgotten how to connect them.

One key element of caregiving is to never shame the person for any issues they may face, including bodily accidents. As a caregiver, it’s important to take these incidents in stride and reassure the person that accidents happen to everyone. By doing so, you can help them feel less embarrassed and more comfortable with the care they’re receiving. Above all, the person should feel safe and secure. Imagine yourself in their position—how would you want to be treated when needing help with your physical needs?

I love my husband. Yes, as a couple we have our ups and downs, but we always get through it. We will get through his dementia ordeal as well. I had an eye opener one day when watching a training video.It made me realize that he is to receive pallative care as his brain disease is terminal. It’s now my responsibility to ensure he feels safe, loved, and as happy as possible until the very end. This level of care and comfort is something I believe he wouldn’t receive in any facility.It is up to me to ensure he feels safe, loved, and happy as he can be to the very end.

Bye for now, Kelly

Navigating the Unpredictable: Caregiving through Sickness, Dementia, and Chocolate Mishaps

Jan17

I’m tired. Yesterday was stressful from the moment I rose from my warm bed. I found Kaya, my dog sick. She would not eat, and she normally eats anything and everything. I have to keep an eye on her. I also had to get Dave ready for his appointment with the orthopedic clinic. So I was worrying over Kaya, Dave is hovering over Kaya instead of getting ready, I’m urging him to eat his breakfast, and so on. I get him out the door and loaded in the car. A bit later he lowers the window. Why? I don’t know but it is freezing out there and he can’t roll it back up. The window is stuck due to the cold freezing temps. He knew I was furious and told me it rolled itself down. Just like a little kid. Dementia is hell. I tell you! I pulled over at the silver bullet (a diner), called his doctor to explain the situation and cancelled his appointment. We could not drive to Fairbanks with the window down. It was weird. The minute that appointment was cancelled, a weight was lifted off of my shoulders immediately. I felt it.

When we got home, I rescheduled his appointment which will now be a month away, and called the vet about Kaya. They got her in at 2:00pm. What a relief. No emergency charge this time. It still cost me $400! Due to her age and kidney issues, I was scared it was her kidneys shutting down. As it turns out, her liver enzymes were up due to something she shouldn’t have eaten. I suspect my husband, who has dementia, gave her chocolate. Today, she is back to normal. She is back to mooching and not walking about huddled and miserable. I hid his chocolate!! He hasn’t even missed it and won’t. He did want to know when he was going to see the doctor again.

Dave’s hip is bone on bone bless his heart. He was bellering for days that he was in horrific pain. The doctor suggested an NSAID ointment to rub on to tie him over until he can get his steroid shot. Now he tells me it doesn’t hurt and he doesn’t need the ointment, but still needs to see the doctor for the shot! Aargh! Dementia makes absolutely no sense. My eye is ticking once again. ~sigh~

Today was spent scheduling upcoming appointments and rescheduling any that were overlapping. I discovered the AI app, Gemini on my cell phone. It can dial the phone and add appointments and reminders. It will make my life a whole lot easier. It’s sweet indeed!!

God bless the world!

Mass is My Respite

Dec29

As a 24/7 caregiver, attending Mass is a much-needed source of respite and rejuvenation for me. Amidst the constant demands of caregiving, being in Jesus’s presence allows me to pause, reflect, and recharge. The serenity and spiritual nourishment I find in Mass give me the strength and comfort to face the challenges of the coming week.

To this day, I still mourn the loss of my regular connection to His presence through my volunteer work in the sanctuary. The absence of that spiritual nourishment felt like a form of withdrawal, as being in His presence had become an addiction of sorts. The sanctuary was truly a place of refuge and solace for me, and adjusting to life without it has been a difficult journey.

As I grapple with accepting this change, I find myself searching for a way to experience His presence in the same profound way I did within the walls of the church. I yearn to bring the Eucharist home, but alas, that is not a possibility.

So, I am left wondering how I can forge that deep connection with God once more. I am feeling empty and a bit lost. I am feeling a lot of frustration and sadness.

As I am writing, I realize I am mourning several big losses in my life. I miss my husband. Granted he is here physically, but he is so different. Dementia has changed him. I never know what I’m going to get from one day to the next.

Side note: For my non-Catholic readers, I know our beliefs might differ. Just keep in mind that my perspective on faith and Mass is deeply rooted in my personal experiences, and it’s something that really helps me navigate life. I respect your beliefs, and I hope you can respect mine too.

God bless

Empty Stares from an Empty Face

Dec12

I don’t know what to do.

You just turn and walk away

You can’t face this reality

and All I can do is pray

So I beg you to listen, work with me and

you push me away

But You can’t face this inevitability

You just turn and walk away

My heart is gray like a foggy mist

Because one day I realize

You will no longer be there,

though I will be able to touch your face

and all I’ll see is an empty stare emitting

from your face.

You can’t understand nor realize

just how much I really care

I love you so deeply

and I’ll always be there

to care for your scarred worn body

and caress your sweet face

of the man who I’ll love always

My husband with an empty stare

You are there though you are away.

Never to return.

You are now a man with an empty mind,

an empty stare, and an empty face.

Yet, I’ll love you always, my man with an empty face.

( I used to write poetry all the time, but have gone stale since I haven’t written poetry for eons.  I may make revisions over time.)

Plowing Through: A Caregiver’s Journey Through Life’s Unexpected Obstacles

Dec12

I can easily imagine a world where you could live in a dystopian apartment block where 20,000 residents never need to go outside. https://www.birdsadvice.com/inside-a-dystopian-apartment-block-where-where-its-20000-residents-never-need-to-go-outside/?fbclid=IwY2xjawHIEKJleHRuA2FlbQIxMAABHaAhwt9VjZ1a7ubXvSEpmW_X79S2JJJX2IgbnRueWtHR5yUCvF2m3IaRdw_aem_AaNdnesY-tHwPIM0GICcRw

I’d never have to worry about Dave. I could conveniently go to my PT or grocery shop and leave him home. If he did wander, he would be quickly found. By the time I met all the neighbors, they too would know he had dementia. That would make my life so much easier and him happier. He’d have plenty of people to talk to up and down the halls. I’m not fun. I’m a silent type of person. I talk some, but not much. Whereas he can BS forever!

I would miss out on nature and outdoor activities, and I’d have to get outdoors to enjoy what the natural world has to offer; the scent of flowers, trees, and grass, watching the flying insects and birds and feeling the wind on my skin.

Before my Dave’s dementia got worse, he and I would go to our cabin in the southern part of the state. I could walk forever on the train tracks taking in the wonders surrounding us in the woods and marshes.

One year, the water was so high, that it was almost up to the train tracks. As we walked along the tracks, taking in the wonders of the woods and marshes, we saw a pair of geese paddling lazily about their pond. Swans and geese are territorial! They spotted us and fearlessly paddled up to the tracks threatening us; cursing and flapping their wings. What a ruckus they made. We turned around and headed back down the tracks with them following us overhead until we got home. They then flew back to their nesting area. It cracked us up. The next time we decided to walk, we went in the opposite direction. I truly miss those times with Dave. We had so much fun; just he and I at the cabin enjoying time with one another.

Dave and I went to the doctor yesterday. The doctor is elderly but still brilliant. He is also a friend. Dave normally loves to see him. They catch up on what’s been happening in their lives. It’s usually never a problem, but yesterday, he sat in the waiting room chair slouching, arms folded, while grumping and growling under his breath. He was scared he was going to get bad news from the doctor. When Doc came out though, he straightened right up, thrilled to see him, forgetting he was worried.

Dave was surprised when Doc started addressing me first, but he eventually got to him. He just wanted to ensure his medication was still working well.

Doc has diagnosed me with lipedema. We had been conversing via email while he was out of state. When he saw my legs, he was quite alarmed and contacted the PT department at the hospital. He is prescribing PT twice a week for one to two hours at a time to get this issue under control. Dave can’t follow conversations very well which is in my favor.

When the time comes for PT, I’m not telling him anything except that I have a PT appointment. I’ll load Kindle Fire with movies to keep him entertained. If he knew that the PT sessions would be from one to two hours, he’d want to stay home; not understanding why he can’t remain alone. At the same time, he will not allow anyone to stay with him so that he can remain home. (If you read my other blog entries then you’d understand why he can’t stay home alone. It is due to a safety issue. He makes poor dangerous choices.)

When Dave gets stubborn and argumentive, my eye usually starts ticking. I feel helpless. Thankfully he can’t see my stress or he’d stress out too. That is the last thing I want, so I try to remain calm. He can’t help who he is now.

Dave often responds as a child when he is resistant to something he has to do, but I can’t treat him like one other than try to soothe him. If he were a child, I’d give him a swat on the butt or threaten to ground him if he didn’t straighten up. I can’t do that to him. He is an adult, even if he is acting childish. He has regressed enough that he now wipes everything onto his pants. It’s so gross. Getting him to change them is another challenge.

Today was frustrating. My quad broke down so I can’t plow. It died in a bad part of the road. Luckily our neighbors saw us and effortlessly pushed it into my daughter’s drive lol. I left it there. She said she would mess with it this weekend. It’s something to do with the battery. I am sure of it. The lights won’t even come on.

I can’t find my PT referral either. It and a Christmas card went missing yesterday. It happened while I was putting away groceries. I located the Christmas card. Dave had opened it and stuck it between two books on the bookcase. I don’t know what he did with the referral. That will teach me to leave my stuff on the coffee table where he can see it. I normally try to ensure he doesn’t have access to the mail, but my arms were loaded, and I dropped the mail and PT paper there while passing. My bad. 🙂

Two positives happened that perked me up: My Dave helped me shovel our walk which was a nice surprise. Unfortunately, the way the snow is coming down, it will be needed again. He rode with me to the gas station to get fuel for the generator. He lifted the gas cans for me when they got full into the back of my truck. If the electricity goes down, I can plug in the generator. I wish I could afford a generator that would automatically start.

I just got some good news. My son is off tomorrow. He has a truck with a plow on it!! He said he would help with the snow! Yay,!! My heart is filled with relief and joy.

It’s time to wind up this blog entry and publish it. I already fed Dave and the dogs. Dave refilled the dogs’ water bowl and set it on the couch. I need to move it to the floor, and I think I’ll take some time to read. Bye for now.

A Holiday Outing to Remember: Breaking Routines and Making Memories

Dec10

Sunday started off as normal. Dave got up, and ate his PB&J like always. He was fine but then suddenly started drifting off in his recliner. I was headed out to Mass. I told him he might want to go back to bed for a little bit. My daughter was coming to stay with him.

Upon my return home, my daughter told me he wasn’t feeling good. I went in and checked on him. No temp but he was asleep. He grumped a little and told me his brain was acting funny and he didn’t feel right. He’s done that before, but never to this extent. It was quite alarming to me. Several hours later he still didn’t get up.

I checked on him several times and turned on Stargate for him. He loves that series. Even if he wasn’t watching it, he could hear it. I ended up sitting with him the rest of the day, ensuring he drank fluids and keeping an eye on him while playing word scape on my cell phone. Later he suddenly came to, ate a snack I brought him, and felt much better. So he continued watching Stargate into the night.

I tried to get him to eat some more, but he informed me he was watching his weight! I went to sleep to wake to a blank screen. He surprised me again. He doesn’t remember how to turn off the telly, but he is great at disconnecting. He disconnected the Roku lol.

After doing some research and entering descriptive words into Google, the AI generated a response that said, “If your loved one with dementia is expressing difficulty comprehending things, seems tired, and needs rest, it’s likely a sign that they are experiencing a “cognitive dip” which can be common with dementia, and the best course of action is to let them rest and avoid overly stimulating activities for the time being.” Hubby doesn’t remember anything that happened on Sunday.

Dave felt so much better yesterday. We went to town and stopped by Barnes and Noble, to pick up a nice bag for presents. This is the first time we have been to B&N in three years. While there, I treated Dave to a Mocha and a large chocolate chip cookie. He was so happy and it was nice to see him back to his energetic self for someone who hadn’t gotten out of bed the day prior. Afterward, we went to Walmart. I got him to look at the snack corner. The next thing I knew, he had small fruit pies and a Dr. Pepper in the cart. He also found a sandwich he wanted. Yes, the stuff gets expensive, but who knows how many years he has left, so I spoil him.

Later that evening, my daughter and her fiance’ took us to view Christmas lights. Dave actually got into it! I was so thrilled and relieved he was enjoying it. I never know how he is going to react to something new. He likes routine and this was definitely out of his routine. However, I emphasized more than once, that this was for her birthday. This is what she wanted to do. So he went along with it. The world ordinarily revolves around him now, but last night, he ensured our daughter enjoyed her day.

11 Years Later

Dec3

It’s been 11 years since I last journaled!!  My life has changed dramatically. I’m retired. I’m a full-time caregiver to my husband who has dementia.  This summer was wicked, but thanks to Gabapaten (for my husband) life is easier again.  

My husband suddenly became angry and paranoid.  His anger and paranoia got worse with each passing day.   One day he decided he was going to walk to Safeway.  I thought he was out in our woods raking. He loves to do that daily so I was not concerned.  Luckily he is pretty crippled up, got tired, and came home. It was truly a tough summer.  He was so angry.  I realize he’s lost a lot of freedom. He is no longer allowed to drive, go anywhere without someone, or be alone at home.  He makes poor choices now, and as a result, I am with him 24-7 except on Sunday morning when my daughter comes by to sit with him while I go to mass.

 I don’t want my husband sedated. That is no life. In desperation, I researched the Internet and found an article about the testing of Gabapten on dementia patients who are having behavior issues. I reached out to our doctor who agreed to try it out. What a miracle drug!  He’s back to being my sweetie!  I look back now and chuckle, but it was not funny at the time. I was exhausted mentally from the stress.  ( Collapse )

Star who is now 11 years old, slipped this summer and injured her spine.  She was on a leash for several weeks and what an unhappy girl she was.  She is an active girl but didn’t get much of a summer due to her injury.  It is winter here now and she spends a lot of time outdoors now that she is healed rolling rocks looking for voles. Her arthritis is awful in the evening. Sitting down and getting up is painful. She is on Galliprant and Gabapaten.  They help but the vet wants to put her on that controversial drug, Librela.  I refused.   I called and left a message that I’m not interested in Librela but in using Adequan.  I received a voice message from the vet once again pushing Librela and not one mention of Adequan!  So Star is still on Galliprant and Gabapaten along with her supplements.  I have to wonder if the vets are getting special perks by pushing librela on their patients? Star also had dental surgery two weeks ago.  By the time they were done along with a $5 complimentary nail clipping, I paid out of pocket $1400. 

 Veterinary costs are skyrocketing and it’s to the point if you get a pup, get health insurance!  Don’t wait.  Only the elite can now afford pets sadly. Once my furbabies pass, I won’t be getting another.  My pension isn’t much, but I love them, so I will take good care of them until they pass on.

I got my husband’s bathroom cleaned.  Ugh. I really need a hazmat suit.  I vacuumed the bedroom.  I need to plow due to the snow that fell last night but not until tomorrow maybe after mass.  I love plowing, but I can’t face it right now.   

Dinner is easy.  I love skillet dinners. Packaged in a bag it gets dumped into a skillet. Eight minutes later, done!  My hubby has a healthy meal.  I season it with Johnnie’s seasoning.  Easy Peasy and pretty healthy.  I hate cooking anymore but I like eating healthy.