Things might be ok

Mom and her coffee

Sometimes when I'm home with mom I think things are ok because she has no complaints, is eating her food, is doing her stretches, taking her naps, etc...but in hind-site, they really aren't as ok as I'd like them to be.  Yes, she's doing everything she's supposed to be doing but for instance, this happened this morning:  I did yoga with mom, made her breakfast, gave her meds and helped her fold laundry.  Mom was in her room while I went out back to water the plants and sit by the pool with the dogs.  When I came back inside I went to check on mom and on the outside, all appeared fine, but when I asked her if she was ok I realized that she wasn't really "ok".  Mom said "I'm awake and ready to eat breakfast".  Instead of telling mom I already fed her breakfast, I got her a small piece of cake I baked with a glass of almond milk, I've learned to not let dementia patients know they are wrong, instead we have to either go with their reality (if it's harmless to them) or change the subject so they are focused on something else.  In this case, I went with her reality and she really enjoyed that small piece of cake!

My point is this: we only know what we ask and want to know.  For my "happiness", it would have been better if I left mom in her room watching her show, but for my knowledge, I have to know these things.  I have to know and realize that mom forgets things, and not just little things, but major things and will keep forgetting them and eventually will have a deteriorated memory where she won't be able to recognize our names/faces.  Ignorance may be bliss, but I still chose to know the reality of a situation.

I have to face these things, however I really do prefer to live life day to day and not "worry" about the future. I don't think I'd be able to care for mom full time if I was constantly worrying, making myself sad/depressed. I am aware that I will soon have to face these moments with mom and family, however for my well-being I chose to live life in the present and face daily struggles rather than long-term events that may, or may not necessarily occur in a fashion in which my mind is imagining - I can't foretell the future

Don't tear me down

Having a day out with mom

When you chose to give up a part of your life so another can simply live, you see yourself differently.  For example, I look at myself and reflect daily when I wake mom up to rub her neck, or massage her shoulders because her scoliosis sometimes leaves her a bit immobile and stiff.  I reflect as I'm reading the side effects of my mom's medications, and researching Dementia and its affects on family while online.  I often pause when I'm bathing my own mother, or cutting up her french toast.  When I'm exercising with mom, I take a moment and say I am grateful.  I see myself differently.  She's not my child...she's my mother.  She's not my "responsibility" I chose to make it that way and see it that way, so it's a choice I am living with, making the most of and seeing the good in.

I never thought I'd be doing this after my son turned 18 because in hindsight, he is our only child and him turning 18, graduating high school I felt that we did our jobs as parents raising him and would now be there to support him during his adulthood.

Well, things happen and according to life, I am not done caring for another life.  This is brand new to me, as it is for most caregivers - it's a wake up call, the biggest reality check known to man, a slap in the face to wake up and live life with your eyes wide open.  Having this responsibility on myself and my family has definitely made me a stronger person and has given me self confidence because I have to remain confident in caring for mom.  I have to believe in myself and know I'm making the right choices in life, that I'm making a good decision for my family and I.  With all that on my shoulders, there are still people out there wanting me to fail and crumble, but it's just not in my nature to break down and lose it.  The harder you throw the ball at me, the more eloquent way I'll figure out a way to catch it without getting hurt.

Some people feel they are better than others because of their thoughts, beliefs and actions and show that by judging others although they claim they are just trying to help. If it was out of help and concern, why would I end up feeling horrible afterwards?  Helping one another should leave a good trusting feeling.

In my life,  I haven't felt that I was better than anyone, but always did things to measure myself to those who felt they were better than me.  As a grown woman with a family and responsibilities, I have learned that no one knows another's life and that as people, we need to be here to support one another instead of intentionally trying to find ways to tear one another apart. I have also learned that the only person I need to measure up to, is the person I promised myself I would be to my family.  I'm still working on it and whomever or whatever you feel I should be makes absolutely no difference to me; I'm just trying to get through life being me and taking care of my responsibilities the only way I know.  This is what I know, and I if you wish to judge me; please continue to do so silently as a coward would.

I am not a hero or a saint - I'm a humanitarian lending a helping hand - I keep a blog as a part of my healing process and as a way to cope.  This blog believe it or not, helps brings awareness to my mom's disease and it's written through MY perspective much like a diary.  I try to quote citations and articles as much as I can to back up what we experience in my home as caregivers and what mom goes through as having Dementia.  Take it with a grain of salt - it's not meant to offend anyone, but I will not censor my healing process; this is one of the only ways of me expressing myself.

Thanks for reading - it's greatly appreciated.  Please share thoughts!

A Vacation.

A family photo taken at a record shop in New Orleans in the French Quarter

So we took a vacation.  I was nervous thinking we wouldn't be able to.  I had to pack for mom, get her to doctor visits so she'd have enough prescription meds, had to find someone to house-sit our pets, find someone to care for mom, etc...Well, thanks to family and friends we were able to make it come together.  Our son just turned 18 so it was important for my husband and I to give him a vacation.  For the past 3 years, Mom has suffered from Dementia and has been living with my family and I.  We've cared for her, and have taken over all of her responsibilities. As some of you know,  I quit my job in December, 2012 to care for her full time.  This past year has been difficult as her health has declined.  It's tough, but with my husband by my side, it has been easier - his support and help with mom is in-measurable.  Well, all that said, we traveled over 25,000 miles in 2-weeks and visited some places we've never been as a family.  I was excited to visit New Orleans the most!  We got to also visit with friends and family throughout our trip, which was important to me since I don't get out of the house much, I need to socialize; it's been weird since I've left my job - I'm almost a hermit! I know that's not healthy, but my work here at home never seems to be done from bathing and feeding mom, to exercise and laundry, grocery shopping, preparing meals, etc...it's a lot of daily tasks and in no way can mom be left alone.  I try and take mom out of the house once a week, but more than that really drains me!  It's so hard getting her ready and she has a fear of stores and being picked up by police (part of the disease) and it's difficult calming her down, so a trip out on the town can turn into a stressful event for us both.  Of course I give myself days off where I do nothing but the usual type of things, and make sure I relax, relax, relax!  I worked in the 9-5 world for 15 years, and don't really miss it because I have found my life is drama-free  now and much more pleasant...no negativity, and that's especially important!   

Our vacation was much needed for us all, I was worried at first leaving mom for 2 whole weeks thinking the worst...I even had a nightmare that she fell! :(  Thank god all was OK and needless to say, she was well taken care of plus had a good time!  She sure missed us, but mainly I think she missed her bed and privacy. Although mom suffers from this disease, she still appreciates her quiet time and really needs to feel safe, my house is her safe haven because it's what she knows.  I left a huge 2 page to-do list for mom's sitters!  I think they all followed it pretty well, and for that I'm grateful.  My aunts would send me updates and pics of mom!  All said and done, I feel blessed to have gotten a piece of family time in there.  It's very difficult caring for loved ones with sicknesses and disabilities because sometimes the family suffers emotionally and have read horrible statistics of caregivers suffering the most, loosing their sense of self and spiraling into depression.  Please read more by clicking here ---> Caregivers Health 

Blogging is my connection to the outside world and writing my experiences down has helped me feel not so alone in my journey in caring for mom.  You all reading my blogs and facebook updates means a lot to me, because I feel that these thoughts dancing inside of my head are somehow serving as tools to some of you who might not be familiar with Dementia, so in a way I feel that I'm bringing awareness to the disease and helping others and that's the goal.  Thank you for reading and please continue to share my blog with others!  It's deeply appreciated.

Sincerely,

EV :)

You are what you eat

Steel Cut oats almond milk organic strawberries chia and flax seed

GMO's (Genetically Modified Organisms) and other Chemicals in food cause brain plaque which leads to mood swings and memory loss. If you're feeling signs of depression, you might want to check your diet for GMO's. I also try to stay away from certain grocery store brands that rely on Monsanto for their ingredients, Monsanto is a conglomerate agricultural biotechnology corporation that uses heavy amounts of pesticides, chemicals and GMO's in their products, their primary platform would be corn, corn oil, and soybean oil which 85% of grocery store shelf products rely on. Here is a list of brands that rely on Monsanto to produce their products:

Grocery Store brands that rely on Monsanto

Because of these facts, I've altered mom's diet with mainly natural and organic foods. I'd say at least 90% of her diet is from real foods like protein and veggies. I also give mom Almond milk for calcium and organic bran/oatmeal because she's at a very low weight, and those complex carbs help her have a little meat on her bones as does brown rice, potatoes, sweet potatoes. I also cook using coconut oil and grape seed oil. (Look up the benefits).  
I'm not perfect, sometimes we eat fun junk food like nachos, cheeseburgers, but they come from my kitchen and I use grassfed beef because 1, it tastes better and 2, grassfed beef has a lot of health benefits with an increased source of iron plus the most important being it has no GMO's Benefits of Grassfed Beef .  Observe your diet, see what you eat the most of and buy the best. For example, if you eat chicken daily - buy organic chicken. If you eat salads daily, buy organic greens. Shop your local Farmer's Markets first. If you're reading this and you're from the valley, Mcallen, Brownsville, Mission, Weslaco and South Padre Island all have some sort of local growers/farmers markets. Call your local Chambers, and or libraries to find out where your local market is!

It can take years to cleanse your body and gut of the harmful toxins you've been ingesting over a long period of time. There are a lot of natural ways to cleanse your system, such as juicing organic greens/veggies/fruit, doing yoga, and drinking water daily.

I do yoga with mom 3 times a week, and after every session, she has energy and wants to continue moving so she usually sweeps the kitchen and house. No, none of these things I'm doing will heal my mom or any dementia patient, but it will give them longevity and clear their minds at times and most importantly give them energy! All movement helps their circulatory system; you don't want your parents sitting in bed all day with zero exercise, they will form blood clots and will lose all muscle. Mom has lost muscle, which is why she has dropped weight. There is only so much strength training she is able to do, so she will never get that muscle back; so sad. Mom used to be a marathon runner, and biker, also did triathlons - she was very very athletic and at her age developed "Runners Feet" and arthritis in her feet which can be painful for her at times, so even walking can tire her out!

it's important to provide quality of life to our aging parents whether they are sick or not, they are still alive and they still feel - it's up to us to care for them and make the rest of their lives as comfortable as we can. It can be a very stressful situation and like us, will have to sacrifice a lot of time, as mentioned before I resigned from work to care for and be with my mother full time because it takes 24 hours of real care and overseeing. I oversee mom 24 hours a day and care for her about 15 hours, and spend real daughter/mother time around 1 hour a day. Groom and shower her, read to her, clean her room and laundry, shop for her necessities, prepare all of her meals, I do it all with the help of my husband of course, but when mom's good and taken care of, I can then take time for myself and sit and read, swim or do yoga - go to a movie with my husband...anything. What good am I to my mom, family or myself if I don't take care of me? I mention this because changing the type of foods I've been preparing and eating has enabled me to drop 30 pounds. I don't follow any diet or exercise program, I just eat what I prepare and that includes steak, veggies, tacos, pancakes, salads - the thing is that it's all from my kitchen being made with real ingredients, no shortcuts! Also just daily exercise which is just yoga. I resigned in December 2012 and just a few days ago I weighed myself and saw that I've lost a total of 30 pounds. Imagine how much I can lose if I actually try to "lose weight". I think I'm too laxed for that though!

Good or Bad, I'm stuck with'er!

yoga and strength exercises with mamma

She has good days and bad days. I remember the bad days all too often because I dread them and don't want to deal with them.  It's hard on me because I go through it with her and there are no answers that satisfy her. it's a continuous circle of questions and accusations, it's just a continuous circle. I am more than familiar with mom's episodes, but each time I have to tell myself it's her disease, and like a continuous circle, I have to loop that phrase repeatedly so that mom can live a healthy, happy life and remember me as the calm centre of her mental chaos.
I can't believe that I am the thing that makes sense in her life...out of everything in this world, I am the one constant she has to rely on. Knowing this, I want to be as humorous and gentle as I can, but believe me, I'm also very honest and upfront with her; I can't sugar coat her life and I won't sugar coat mine.  It's the truth or nothing, I deal with things this way because we can only make a real reaction to something truthful...anything fictitious just slows me down - give me the truth or nothing.
So sometimes I end up telling it like it is, and mamma looks at me with her piercing eyes...sometimes with a true reaction, which is what I hope for from her!  Mom can scold me, yell at me, accuse me, but I don't care; (she never yells btw), but her disease makes her paranoid and constant accusations arise (poor mamma).  There are times when I take her words to heart, but learning more and more about the disease I have to remember that her brain is on constant struggle and in a way, she is making her own reality which wouldn't be so bad if it didn't involve her being fearful and anxious, but it does so I have to find ways to either go with it or deter her from her thoughts.  If it's something not so serious, I will go along with it because if I argue with her, she will end up even more confused since she REALLY BELIEVES the stories she's conjuring.  And this is when I take in a big deep breath and smile, and say mom, I love you...lets do some stretching!

And most of the time - it works.   Yoga has healthy neurological benefits; doing yoga releases harmful toxins in the body and releases serotonin which helps battle depression.

Today I gave to myself

Today I gave to myself.  Making pancakes has been a favorite breakfast pastime of mine as of recent.  I enjoy making different combinations of pancakes, they are all delicious and so fun to experiment with.  I enjoy cooking and what I love about it is the way a few simple ingredients can come together and make something so tasty! I prefer using fresh everything...the fresher, the better. I use real butter over margarine, I use coconut oil over vegetable oil, I use grassfed meats over regular meats, I use sea salt over Iodized table salt and I try to use local veggies, if not I opt for the organic store bought ones.  It's easier cooking using fresh, quality ingredients because if all else fails, put salt/pepper, cook, eat and it will be good!

Well, like I said...today I gave to myself.  I made pancakes for everyone, and spent time in my bedroom going through books, and picking 2 to read and finish.  I have a hard time sticking to one book, so I give myself 2 to read at a time.  Aside from reading, I lit candles, did some yoga and made fresh grape juice using organic locals - so cleansing!  Yoga, books, food, candles...oh my!  I feel relaxed, especially since it began pouring rain, blessed.

I had to give myself today because I've had a very tiresome week.  Mom has been ok, but caring for your parent is a mind game.  I wake her up, I fix her meals, I help her shower, I groom her, I do her laundry, I do everything for her as you would a child, as I did for mine, but caring for a child as a family unit with my husband vs. caring for my mother is a different thing because she's an adult who should be independent and self-sufficient, right? But it's not the case here, or with many others.  It's something out of my hands, I didn't ask for this, I didn't willingly volunteer, it was bestowed upon me by nature and I accepted because she's my mother and I love her. I can't go against nature.

I spent yesterday crying in the shower because the day kicked my ass.  Washing mom's hair, and shaving her legs...grooming her all together is a lot to take in. It's hard.  This situation is hard, and I cry, and I stop crying.  I listen to music and I do yoga, I read and cook, I love my family and spend time with them.  I do everything I can do to keep my mental clarity.  You see me, I look relaxed and at peace; I am, but I'm also coping just like anyone else.  I can't help if I have a positive outlook on things and don't get depressed; I just don't.  I'm not a depressed person, I'm quiet, but not sad.  I'm not sad, it's just hard.  It's the toughest thing I've ever had to deal with and live with.  If you see me, or run into me I probably won't ever looked depressed because I'm not depressed, I get the feeling some people want to see a "sad me" they want to see me in tears, or wallowing, they want to hear me complaining, but there's nothing to complain about; I'm happy!  I get myself through, my family gets me through because I love them and never want to live a life of "poor me". I don't need or want sympathy; it's my mom who's sick and not me.
I just need those who know me to understand that  sitting in a cafe or having lunch at the most delicious places sounds nice, but not priority, I no longer think about social events that involve trivial things.  My mind is not focused on trivial things, it is focused on sustaining my mother's health, my family's well being, and my sanity.  I don't have time for giggles and gossip because I'm busy living and the well being of my mother rests in my hands.  I know this is a lot to put on myself, but it's true...there is NO ONE else out there for her.

I can do this. It's almost been 3 years since mom has moved in, over a year since her diagnosis and 8 months since I resigned from my job.  I want to live a selfless life and learn from this experience, I want to grow as a humanitarian and always do for others.  Doing for others is fulfilling.

Trust me, I don't ignore myself, my needs, whatever...I've just come to a point in life where I realized that I don't need much to be happy and that helping people (even if it is MY mom) is self-gratifying.  I do what I can, I tell her that I need time too; I tell her that it's not all about her, I tell her to chill out and breathe when she feels anxious.  She has good days, bad days, and horrible days.  A REALLY good day is far and few in between, so I have to take her good moments and stop what I'm doing to enjoy the life left inside of her.

I can do this.

A breath of fresh air...

Mom is sitting on the far right, I'm on her left

On the 4th of July we spent a lot of time with various family members.  For lunch, one of my cousins and her family came over for a visit.  Mom recognized my cousin, but could not remember her name. (This is typical). Mom sat and had lunch with us, and chimed in when we talked. (I do my best to keep her in my conversations with others without going too off of the subject, it can get difficult).

After lunch and dessert, my cousin and I sat on the back porch to watch her daughter swim in the pool. We were outside for about half an hour before mom walked out, wanting to join us and sit with us.

Now, you might not see this as a big deal, but please know that my mom has NEVER once gone outside on her own, even when asked to sit out on the porch, mom usually shows disinterest and a little fear (She's been like this since about a year after her initial diagnosis).  I don't know what exactly triggered her wanting to join us, but she did and it was very nice sitting with her and enjoying her company in the cool breeze - it was nice knowing the sunshine was shinning on mom.

It's been a few days since July 4th, and I sit outside every single day - always inviting mom to come out for some fresh air...she hasn't accepted the invitation yet.  She may never want to sit outside on the porch with me ever again, I do not know and I can't force her to do certain things that scare her or make her uncomfortable, so that moment is an everlasting one that I will never forget. I'm happy that my husband even saw that moment as groundbreaking and took a picture from inside of our home to capture it.  I'll always treasure this photo and memory whether or not mom ever decides to join me outside on the porch again because I will know that during that moment, at that particular time mom felt no fear and possibly "normal".

Love you mom!  Always and forever!

EV