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 :)