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

The Peter Pan syndrome

Mom watching Peter Pan

Today I woke up early to run some errands and do some shopping so I fixed mom an easy breakfast of cereal, banana, yogurt and strawberries along with her meds.  My husband stayed home with mom while I was gone  and when I came back, he told me that my mom had been asking him about information and asked him if he had the information she needed.  He said no, I have none to share and she said ok, well I'll wait for the boss ( she might have been referring to me figuratively) but she could have actually thought that she was in a work setting waiting to get information from the "boss".  I think it was the latter, because when I got there mom approached me and asked me to share the files with the premiums with her...

Now, I've blogged about this before - mom often thinks she's at work and will look for files and ask questions about policies for certain people.  What do I do in situations like this?  I answer her questions, but I also try my best to reassure her that it has been taken care of and not to worry.  This works at times, others not.

When it doesn't work - when mom is not satisfied with my answers, I have to either ignore her and let her continue to pretend and act as if she is in a different place/time, or I can try to find ways to calm her so she's not moving and pacing around so much.  Dementia patients can (and mom in particular) have tremors and bad balance.  Plus mom also has a slight curve in her spine and arthritis in her feet, so when she's pacing back and forth it wears on her yet she doesn't stop until her "episode" as I call it gives out.

Today, I lead mom to the sofa with a lot of pillows to support her back, gave her some water and some fresh fruit...then I put on Peter Pan.  Growing up mom was big on singing us lullaby's nursery rhymes and she used to love cartoon and fantasy characters like Red Riding Hood, Pippi Longstocking, Raggedy Ann and others.  I know children's cartoons and stories have a calming effect on mom (and on me too).  So we sat down together and have been watching Disney movies all afternoon.

There is something about Peter Pan - he makes you feel young and encourages you to be forever young, an eternal child and it's a good feeling.  Watching Peter Pan and watching mom laugh and enjoy the movie has me thinking about her illness and her own syndrome...it has me reflecting.  I am her mother figure now, I play the part of her parent showing her and leading the way, I play the role of helping her and tucking her in at night, saying prayers with her and making her pancakes as a special breakfast. I'm the one to make doctor's and dentist appointments for mom and taking her to them. I play the role is saying a nursery rhyme to mom to see if she remembers them...I am that figure in her life.  She is regressing, not just because of her age, but because of her illness, it's inhibiting, much like the "Peter Pan Syndrome" can be inhibiting and hold you back, except for mom...no psychologist can ever help heal her mind to later live a "normal" life outside the Peter Pan Syndrome.

We might be watching  fun movies right now, but she is still going through her motions on the inside...I know nothing can stop it, it stops on it's own, but I can do my best to try and take her mind off of it.  When the movies are over, she can go back to thinking she's at work, or maybe...her "episode" will have passed.  You just don't know with these things, they take on their own life-force.

For now, we're ok and for now - growing up is not an option.