A lot on my mind, yet nothing at all

Hello,
Just stopping in for a quick update.  Just because I'm not writing or updating doesn't mean there's nothing going on.  There is always something going on - we are constant; we don't stop even while asleep.  Our minds are always working, our hearts are always feeling and our souls are always searching, at least it is from my perspective.

Just like our bodies and minds are constant, so is mom. Mom is constant; she might not be predictable, but she's always going, even when it appears that she isn't, mom is going through different cycles and changes and can never quite adapt to a "normal" schedule and if she can't adapt to a schedule, that means I can't either, so needless to say - I'm ever-changing.

Here's the thing with me...I expect the unexpected.  I expect the most outlandish circumstances and behavior patterns when it comes to mom so I'm never all that surprised.  I'm very adaptable - I'm like a chameleon, interchangeable.  It's not chaotic, it's subtle. As much change mom goes through, she's also subtle and she's the least dramatic person I know.  Mom doesn't cause scenes, mom doesn't speak out of place, mom doesn't interrupt, mom doesn't get involved when it doesn't involve her; mom is quiet.  Mom is a simple person, mom has never been into jewels, name brand bags, shoes, cars, etc.  Mom lived a simple life and did what she enjoyed and kept to herself except when she didn't.

Mom's personality is sheltered, quiet.  I was never close to my mom, and I don't feel I've learned much from my mom at this point in my life - maybe I have, but can't see it; I don't know.  I think not knowing mom so well has me making up for lost time by taking care of mom and learning from her, not from her as a person, but from her situation.  Not being close to my mom growing up hasn't stopped me from caring and loving her - it has actually made me curious to the type of person mom was.  I never really knew my mom.  I can say things that mom liked.  Mom used to love Captain and Tenile, Linda Ronstandt, Dolly Pardon, she loved Olivia Newton John, mom loved fairy tales, mom love poems and rhyme, mom loved The Wizard of Oz, mom loved Gone with the Wind and mom loved Jane Fonda - because of Jane Fonda, my mom grew to love aerobics and exercise then later running - she loved it with a passion, she even started running races and getting 1st in her age division time and time again - she built walls of trophies.  Mom ran marathons - mom participated in triathalons.  Mom did all these things, but not with me and not for me.  Mom did these things for herself; they were her escape and I respect that, but unfortunately I can't relate.

In mom's situation right now, I can see some things in mom I never did...I see weakness, fear, I see mom become annoyed, I see her anger, her pain...I see her sadness.   I see all these seemingly "weak" traits, but have to tell myself that this isn't mom - it's her disorder, her dementia.  Sometimes it's hard to distinguish because I never really truly knew mom.  Maybe we never really do know one another - we only know how that person can make up feel, and know what we see.

Here is a good thing: I see a funny side to mom.  I see mom's sense of humor and I can joke with her because I know she enjoys laughing.  Sometimes she can't figure out when I'm joking because of her condition, but the times when she's able to are fun times.  Mom also has an extended vocabulary.  She enjoys using her words which is a little sad to me, because she is constantly searching for words and they sometimes don't make it out of her.

All of this said and done - I have to say that this journey has been an interesting, soul searching

This is the life of a Caregiver

I recently applied for extra provider hours through the Star Plus Waiver services program from Superior.  I was interviewed and asked a list of questions.  I became very emotional during the interview and broke down and cried.  I felt overwhelmed and realized everything that I do for my mom from the list of questions I was asked.

I cook for mom and feed her every day.  I change mom every day (maybe more than once if she has an accident).  I help mom in and out of her bed every day (several times a day).  I take out moms chair and push her in to eat - then help her out of her chair every day (several times a day). I often cut moms food for her.  If mom watches t.v. - I turn the t.v. on for mom. I brush moms hair every day.  I try my best to do things with mom when I'm not feeling tired, overwhelmed or depressed - it's hard.  I stopped doing things for myself like exercise and eating healthy because I'm busy getting mom to exercise and eat healthy and then get too depressed to love myself.  If my son catches me crying - I pretend I have something in my eye or tell him my allergies are bothering me.  I don't want him to see me crying.

Sometimes mom doesn't want to eat - she fights me with it.  Sometimes mom doesn't want to take her meds - she fights me with it.  Sometimes mom doesn't want to shower, change or exercise - she fights me with it.
Without a provider I shower mom, with a provider I STILL SHOWER MOM. I take mom on walks, I take mom for coffee and once a month, I take mom to have lunch or dinner at a restaurant.

I read to mom.  I schedule all of mom's medical appointments, I take mom to all of her medical appointments (monthly - she has 2, sometimes more).  I drop off moms prescription and pick it up at the pharmacy.  I give mom her meds.  I read about mom's illness and I give her natural remedies such as tumeric, coconut oil, flax and chia seeds, fish oil and vitamin D...I go to the health store to buy them and I give them to her.  If mom needs new undergarments or clothes - I go and buy them for her.

If mom has an episode - it's ME who sits with her and calms her down, if mom can't sleep...I can't sleep because she will not stop knocking on my door.  If mom is scared, it's me who calms her.

These were some (not all) of the questions that the interviewee went over with me.

This is the life of a Caregiver

Providing assistance

Interesting that some people that I know have the huge misconception that I get paid for taking care of my mom. No, I have never received a penny from any agency. When I first made the decision to leave my job I thought about being a paid provider for my mom, but at that time was told I couldn't be. Fortunately  it worked out in my favor because I ended up qualifying for paid caregiver relief to give myself a break, so I chose an agency and they helped hire a provider for my mother who comes Mon-Fri 4 hours a day. (Those are our qualifying hours). The provider is actually there to relieve ME of my usual activities with mom during the time she is there, so this gives me time for myself, but not time with my family because my husband is working and my son is working and in school during those hours, so family time or date nights are rare, but that's ok because were doing a good thing being there for mom.

The paid provider cooks for mom, makes sure she eats and takes her meds, changes mom, showers mom (I shower mom when the provider doesn't show up and on weekends). The provider also does stretches with her, and does her laundry and helps with some housework.  That's what a paid provider does...me, well I'm a caregiver and my time with mom is 24/7. This morning mom woke up at 6 am because she wet the bed so I had to clean her sheets, mattresses and clean/change her. The other night, mom woke up at 2am and was hungry so I gave her a snack. Last week there was a night where mom didn't even sleep so I laid on the sofa making sure she didn't get hurt.

Having caregiving assistance is great help,  but no amount of help will ever replace the life I used to have with my husband and son before mom got sick 4 years ago.

I don't know what to think sometimes. I'm blessed and happy to be spending time with my mom, but I'm also tired and fight depression almost on a monthly basis. Unfortunetly I sometimes turn to food, then gain weight...then I start eating healthy and exercise. I often skip meals because I don't like preparing or cooking food for just me, and by the time I get mom's lunch ready, and sit her down to eat, I've lost my appetitie.

Some friends have reached out to me and that has helped me take my mind off of things, I also watch movies, listen to music and read books. I should probably do some more walking. I used to take a lot more walks with mom, but she has arthritis in her feet and walks very slow so it's easier to take short walks 1-2 times a week.

I try to keep as busy as possible and recently took up couponing..I've been saving ALOT of money plus keeping myself busy.

I'm lucky to have what I have, and lucky to be where I am and give thanks everyday.

Reality CHECK list

I recently applied for more caregiving hours and special at home hospice care for mom and I. I see mom spiraling deeper into this illness and want to be prepared with as much physical support as I can get that's offered. Reading about Dementia, studying it and trying to look for help and plans available for patients and caregivers is a lot of work.  The other day I got an at home visit with an govt. health provider where I received an interview to apply for extra at home care/treatment.  I was asked about 50-80 questions all dealing with moms health, doctors and the amount of time mom has lived with us.

The interviewer said it was rare for someone my age to be married with a family, she then said it was even rarer that I was caring for my mom in MY home, she said most caregivers sell their homes and move into their parents homes when they are their caregivers.  She commended me, but tbh mom didn't have a home, she had an apartment...she then said well, in those cases the elderly usually end up in homes so I should still be commended.

All that said, I was asked a list of questions that I am always prepared to answer from the meds mom takes, to her income status, to our living arrangements, to how the illness has progressed, etc., but what I wasn't prepared for was the list of check off items that I do for my mother as her caregiver on a daily, hourly and minute to minute basis.  I felt overwhelmed and began crying because it was at that very moment that I realized just exactly how much I do for my mom and for how long of a time I've been doing it for.

I was exhausted just answering the questions and became very emotional knowing that I truly am my mothers caregiver and that I am the one constant in her life.

I do hope I get the extra help which would include provider services 7 days a week for a total of 32 hours...it would also include help in disposables for mom, and nurse visits, plus some therapy.  Please cross your fingers, send good vibes, prayer, etc. for us.

Goodnight.

Don't call me mom

Mom recently spent 4 days with her sis while my husband and I got to enjoy some R&R and much needed time together. My aunt enjoyed having mom there as much as mom enjoyed her company, but she had alot of difficulties.  Mom wouldn't take her Meds,  argued about taking showers and unfortunately she had an episode. My aunt explained how worn out she felt especially since mom didn't sleep one night... been there many times. I feel bad for my aunt,  but she was do understanding and explained that it hit her emotionally,  spiritually and physically. ..yep. Since mom had been home, she had napped, had dinner,  took Meds, watched tv,  had dessert and washed up before bed.

After I put mom to bed, she got up a few more times...the first time she got u.p I gave her some yogurt and fruit for a snack. We sat in her room a little and she laid down again.  mi.mutes later, she came into my room asking where I was. I'm here I told her....walked her to her room and out her in bed again, this time with prayers.  10:45 p.m. She got up again, she was standing in the living room, I took her by the hand and tucked her into bed. Goodnight mom I said...no, good night mommy she told me.

Don't call me mom

Walls hold us inside of this world we're supposed to know as reality.

It's suffocating and dreary.
I'm alone an teary.

Your hands are tiny bony digits that shake and tremble.

I'm a broken doll, never been assembled.

You call me mom, but I'm no figure to the only mother I've ever known

...a daughter to the great unknown.

Thankful Thursday

Today, like most days can be was a little hard on me.  I actually heard my mother say these words: I want to die.

Mom was going through an episode and felt that she was in danger, she thought people wanted to kill her and she then said, "and I want to die".

This hurt me so much - although knowing mom wasn't in a moment of clarity, I still took it seriously and to heart so I sat and talked with her trying to figure out exactly why she was saying these things.

Throughout our conversation I told mom she had Dementia, and read her the definition of the illness and let her know that she was feeling, hearing, seeing and thinking these horrible things because of her illness.  I then told mom to focus on all of her blessings in life and she became a little more calm.  We started naming all of the things in her life that have made her happy then I told her it would be a good idea to do that everyday and to follow the list of happiness by thanking god.  She did.  She said a prayer and thanked god.  I told her thank him some more...over and over again, every day....I told her to keep thanking him.  I don't know, but afterwards mom was wearing a crooked smile and I asked her if she felt better and she said she did - I know it was true.  Thanking god for what we have and who we are, what we were, who we will be is a huge blessing.  We are blessed and we are thankful.

Seth Rogan Testifies about Mother in law's Alzheimer's

I'm happy to know that there are people making a stir about this horrible illness. What Seth Rogan has to say about the illness is very poignant and heartbreaking:

Seth Rogan Testifies about Mother in law's Alzheimer's

I just wish our government cared more about providing help and awareness for the people this illness effects.  Wow...just wow - this is definitely not a priority to our government leaders although More than 5 million Americans are living with the disease. "Alzheimer's disease is the most common cause of dementia, or loss of intellectual function, among people aged 65 and older." Sad. Please read this, you will be surprised!

Seth Rogan blasts Senators for skipping his Testimony in support of Alzheimer's