Tag Archive | family

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

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.

Caregiving is a Lonely Journey. Dementia is Expensive!

Dec3

Caregiving is lonely. You feel abandoned. Friends quit reaching out and avoid you. My family tries, but my family size is minuscule. There are only four of us. So I am in this role for 24-7 alone except when I get to attend mass on Sundays. My daughter watches her dad while I am at Mass for an hour. One bright light is a weekly Zoom session with my past boss who is also a friend. I am so grateful to her. I had to give up my volunteer work. I loved volunteering. It let me help others and gave me a social outlet too. People with dementia become very self-centered. They are scared and cling to whoever they feel is the most important person in their life. So he doesn’t care if I need medical, a haircut, etc. He likes to stick to his routine, and I better not change it. I do anyway. I get my hair cut once every 8 weeks. He had a tantrum the last time he had to go with me. ~sigh~

I have my dogs at least; Starfire, a Karelian Bear Dog, and Kaya, my lab/border collie mix. They are a handful and so much joy. They also give me a lot of stress both financially and their health issues, but a lot of love as well. Starfire’s liver enzymes are a bit high and Kaya has kidney disease. There is no telling what he fed them while I was working. He was starting to show signs of dementia at least 11 years ago when I look back. Medical for pets has skyrocketed. I’m spending over $300 a month on medication for them. A bag of prescription dog food is over $100 a month! I’m now adding rice and veggies to their kibble to bulk it out and save money. A tiny tube of eye ointment is $30 and then the drops are around $80. Kaya has to have it or she will go blind. Starfire’s liver supplement is over $50 a month.

Dementia is expensive. My hubby can tear things apart but can’t reassemble. He tore the siding off the back of the house we currently live in. Where he stored it, I have no idea. I’ve searched and searched. I suspect he dropped it off at the dump. This occurred when I was working full-time. The siding has yet to be replaced. It’s expensive. He was a tip-top mechanic. I had a leaky steering hose in my van. He tore all sorts of stuff out of my van. My son got it reassembled and off to the auto shop it went. Hubby was insulted but he got over it. Now I take all of my rigs into the shop for repairs. I suspect he loosened one of my brakes. It fell off and hung down. What a racket it made when driving. The auto technician was horrified when he saw it. That Autoshop takes good care of me!

My hubby has to have the most expensive food and food in Alaska is already expensive; bread, graham crackers, special tea, etc. He eats a block of graham crackers a day even though I ensure there are plenty of other snacks available for him. He insisted on $6 dark rye bread. Now he won’t eat it. He is positive it has seeds. He believes the seeds are getting under his false teeth. There are no seeds. And that’s another thing. I took him in to get his false teeth relined. Later that night, he dug out the $450 relining! Oh my gosh, I was in tears. Thankfully the dentist has a lot of compassion. She redid it for free. I removed all the tools I could find to prevent him from doing it again. He had done most of the damage in the bathroom where I couldn’t see!

He can’t be left alone. He is still independent but makes dangerous choices. He added hot embers from the woodstove into his plastic trashcan. The floor got scorched. The smell was bad!! I lectured him on the dangers. A couple of days later I caught him putting hot ashes and embers into a plastic garbage bag. Then a week later into another plastic garbage can. This time I had no clue where the toxic smell was coming from. I thought the wiring was melting in the walls, and I nearly called the fire station. Finally, I located the smell coming from his garbage can. So I replaced the woodstove with a pellet stove; $8k later! He is scared of it thankfully lol. But it doesn’t heat like my woodstove did. So we are cold but at least the house won’t burn down! Also, I can’t split wood any longer, and he sure can’t. I’ve had both shoulders rebuilt due to splitting wood for years.

My hubby is furious that he can no longer drive. He insists “they” took his license away. He gave it up voluntarily but doesn’t remember.

This is just a little bit of what is occurring. In my next blog, I’ll write about his delusions, paranoia, and anger.

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.