Caregiving is a Lonely Journey. Dementia is Expensive!

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.

From Joy to Vertigo: A Caregiver’s Honest Reflection

November 18 2024, 09:11

From Joy to Vertigo: A Caregiver’s Honest Reflection

Yesterday was wonderful initially. I got to go to mass, and my son joined me.  After I got home, my daughter, plowed the road for me.  I was and still am so touched by this wonderful act of kindness.  She told me it felt good getting outside and getting a workout. I so understand.  My son also took his dad to town, so I had time to chat with my daughter before she went to plow.  

I decided to take advantage of the quiet time, drink my coffee, and dive into my Bible study.  I didn’t get far.  My son and hubby were back. My daughter came in to warm up.  I thoroughly enjoyed the family time. Once again chatting and catching up.  So much love in the room. After the kids left, I got my hubby his lunch and settled back to study.  That didn’t last long.  He ate his lunch and was restless.  He wouldn’t stop talking.  Everything I suggested he said no to. He chatted with the dogs and interrupted me repeatedly while I was trying to listen to my Bible in a Year video.  I finally gave up.  It’s so weird.  As long as I’m not doing something for myself, he leaves me alone.  I can work from home and he will leave me be, but if I try to take a class online, he won’t leave me alone. The minute I try to do anything for me, he’s pestering me.  Mind you I chat with him and give him lots of time.  All of his needs are met as well.  But it is never enough. He always wants more. I finally told him I was going to lie down. and he was welcome to join me.  After I had dozed off, he came in and switched on the overhead light.   He informed me he had forgotten I was in there.  He turned off the light and shuffled off.  After I dozed off again, he decided the dogs needed their collars removed.  In he came again. Jingle, jingle, jingle. I gave up and came back into the living room.  He then decides to stay in the bedroom and lie down!  Aargh.  

I later saw the light in the maintenance room come on.  I can see it from my living room window.  I went in and found him messing about. The last thing I needed was him flicking switches and valves. He can no longer fix anything but he is really good at destroying.  I got him out of there, and he complained he was cold.  He headed for the pellet stove.  He likes the hot air that blows out from the vents. I got my electric blanket and convinced him to sit in his chair under it.  He loved it.  So it’s his now.  At least he won’t be standing in the warm pellet stove air. He has burn scars all over his torso.  The pellet stove air dries them out and makes him itch miserably.  It’s taken a good week to get it cleared up lathering him with lotion several times a day.

Later I experienced vertigo twice. I don’t know if it was stress or the crystals in my ears shuffling.  Weird I must say.

11 Years Later

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.  

I miss you Little Toot

My pet crab -Little Toot

He can barely be seen. Little Toot is the size of a pencil eraser in this photo. He’s next to the big rock to the left. I raised him until he was the size of a fifty cent piece. He then disappeared. I literally bonded with this crab and vice versa.  He’s a marble rock crab or rather was.  I adored him.  He brought so much joy into my life in such a short while. Yes, we  played. He was right there every night ready to play when I got home.  He ate from my hand. He could have pinched me really hard when he got bigger, but he never did.  He was a lot like a cat.  As intelligent too.Nosy about everything I did in his tank.  He would be right there in the way whether I was cleaning or rearranging.  I ended up purchasing him a 20 gallon tank so he would have plenty of room to roam and explore.  He ate my $35 shrimp lol. That was when he was older.He was so cute. I don’t think the pain of losing him will ever go away. My eyes still brim with tears and that weird feeling appears in my chest.  He hit puberty and went looking for a mate.  Damn hormones.  I’ll never stop loving him. I’ll never stop missing him.  When he left he took a piece of my heart with him.

My Ex: The Narcissist Checklist

If you are involved with a person that has these traits listed, RUN! I beg you! RUN!

Besides this list below, my ex also carried a picture of himself in his wallet, and constantly had his face in the mirror. He was and probably still is in love with himself.  He was heavy into porn, and loved to cause trouble at work between his coworkers. They hadn’t a clue he was the one setting them up.

narcissist-checklist

Expected Response – None

My ex never responded to the Diocese. He ignored every letter. I’m fine with that.  The annulment will take longer, but it will happen eventually. They realized he was playing games. At least his poor mum talked with them.  She did not have to do that. I feel so sorry for her. She is married to a narcissist, and her son is a narcissist. She doesn’t want to acknowledge it and continues to this day taking abuse from her husband and thinking her son is the golden boy.

I still shudder when I think of what my FIL did to his own Mother’s chickens. He hung all of her hens from the clothesline and slit their throats when she was gone one day. ~SMH~ He was a little kid at that time.

Her son isn’t any different. I found out after the divorce he was killing our farm animals out of fury. He’s evil.

It amazes me where I find narcissists. I am surrounded by them. They are where I work, at church, everywhere!

My Dave, the poor man. He forgot he was given an annulment by the church to his ex-wife.  He still doesn’t remember it even though we have the letter. I have to face it; he has Alzheimers. I pray I’m wrong. He can’t remember anything majorly significant.  I love this man, and I will lose him.  I can only hope the Alzheimer’s is slow. We have crappy doctors here. This stuff is as bad as cancer. It eats away your brain. Maybe there are some trial treatments out there?

Hello! Longtime No Me!

Yep, it has been a while. I’ve been so busy dealing with everyday life. Plus my fish, RCIA, and work.  No, the annulments have not yet gone through, Well I take that back. One has.  My husband’s last sociopathic ex-wife. The one who has been remarried over, and over, and over since their divorce. Oh yes, and she ended up in prison for being a prostitute in Kenai & Nikiski posing as a masseuse lol. That annulment went through lickety split.

The other ex-wife of his, as it turns out,  was never Catholic. Anyhow, he and I are still waiting on our annulments. I may end up still attending RCIA through next year if they don’t happen soon. Mind you, I enjoy learning, and Catholicism is fascinating; however, I want to go deeper than what RCIA is teaching. I haven’t a lot of time as it is to delve deeper on my own. I am attending a Bible class once a week too. We are studying the book of Acts, and it is exciting. Those Apostles are amazing. All but John end up dying, and they died for their beliefs. Paul got stoned twice so far. How he survived that is beyond me!

I got a new fish. A wee little neon goby. Bless its heart. It had ich. It was so sick. It’s still in quarantine for two more weeks.  It has perked way up, and so far no ich since I did the container switch method. Hopefully, it doesn’t break out again. It’s a cutie. I’ve been feeding it live brine shrimp. Tonight she surprised me. I dropped in some flakes for the two tiny hermit crabs I have in her tank  to keep her company.  She was on those flakes scarfing away. First time ever!  She is swimming every where too, and she is no longer in hiding. Yay!

I have my second 20 gallon set up. I have the tank to turn into a sump for it too, but just haven’t had the energy nor the time.  The protein skimmer is in to add to it.  I just have to do it. Maybe this weekend. We will see.I’m exhausted. I have to go to the grocery store tomorrow. Dave won’t go by himself now, that is if he can help it.He gets confused so easily. I looked at him hard the other day. He has lost so much weight. He looks so frail. It made me realize that I won’t have that awesome man in my life forever. I love him so much. In fact, more and more every day. I can’t imagine my life without him. So I’m trying to fatten him up. He needs to gain some weight. That last knee surgery really wore him down.

Someone stole my crayons today.~Grrr~ A young woman had a disabled person with her and asked if she could borrow them to keep her entertained, while she was  there to be advised or something. (I work for a university) So stupid me, I said yes, and she promised to return them. Ha! I kept  crayons to entertain the wee ones while the parents come for academic advising. The big plastic animals for toddlers to play with that I had there walked off too. ~sigh~ I know who took those. That woman thinks everything belongs to her, and there is no reasoning with her. Tomorrow I’ll go to Value Village and see if I can’t get some things  for the children and a bag to put them in.I’ll definitely put my name on everything this time.

I did have fun decorating a vase today in hopes that when the  little sign is read on it, people will make donations to the Goodie Fund. They love eating the goodies, so hopefully a few more will see the fancy donation jar and pitch in.Mind you I love making students happy, but being an admin  for a university, I’m not paid a lot.  I do what I can though.  I like seeing the students smiling, and staff & faculty too.

It’s 7:18 pm, and I’m off to bed. It’s been a hard week.

Sweet dreams. kj

 

 

 

My Sweet Sally

I hope I can get back into my writing again.  My life had been crazy  for a couple of years, and I was doing classes too.

Now I’m in RCIA and love it. I can’t get enough. There is so much to learn and I will never be able to learn everything before I die. 😦  I love our little church.  It’s a sweet place and 90% of the people are good and kind. Yes, there are a few snobs, but that is their problem.

I got to feed my Sally Lightfoot this evening by hand or rather chop stick haha.  She is a doll.  Actually she is a marine crab.  It has taken me a couple of months to get her to this point. She is a timid thing and cute as can be. I love all animals. I find marine life fascinating.

 

My Sweet Sally

My Biological Father – John Garner Tynes

Private Messages for kjpeissner

Subject: JOHN GARNER TYNES – ?????? 
From: edmondsallan
Date: 2014-12-23 22:33:28

Hi, be nice if you could let me know which one of these listings could be him – regards edmondsallan

John Garner Tynes
United States Census, 1940
Name: John Garner Tynes   I guess it would be this one.  Sorry to respond so late.  
To: kjpeissner
Event Type: Census
Event Date: 1940
Event Place: Ward 10, Waco, Justice Precinct 1, McLennan, Texas, United States
Gender: Male
Age: 7
Marital Status: Single
Race (Original): White
Race: White
Relationship to Head of Household (Original): Son
Relationship to Head of Household: Son
Birthplace: Texas
Birth Year (Estimated): 1933
Last Place of Residence: Same Place
Household Role Gender Age Birthplace
Joseph F Tynes Head M 38 Texas
Ruby Tynes Wife F 36 Tennessee
Franklin Louise Tynes Daughter F 16 Texas
Della May Tynes Daughter F 14 Texas
Ford Tynes Son M 12 Texas
Jeanette Tynes Daughter F 8 Texas
John Garner Tynes Son M 7 Texas
Imogene Tynes Daughter F 6 Texas
Ruby Fay Tynes Daughter F 3 Texas
Wilbur Lee Tynes Daughter F 2 Texas
District: 155-43 , Family Number: 220 , Sheet Number and Letter: 12A , Line Number: 35 , Affiliate Publication Number: T627 , Affiliate Film Number: 4100 , Digital Folder Number: 005457450 , Image Number: 00530

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Citing this Record

“United States Census, 1940,” index and images, FamilySearch (https://familysearch.org/pal:/MM9.1.1/K4S3-2ZN : accessed 24 December 2014), John Garner Tynes in household of Joseph F Tynes, Ward 10, Waco, Justice Precinct 1, McLennan, Texas, United States; citing enumeration district (ED) 155-43, sheet 12A, family 220, NARA digital publication of T627, roll 4100, NARA digital publication of T627, National Archives and Records Administration, Washington, D.C.