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Why this blog, why now

I am not here for followers, or fame.  I am writing here to put down my feelings of grief, sadness, hope, and frustrations in my life as a daughter who helps her father take care of my mother who has dementia and cancer.  My life right now is so upside down with fear and emotions that I need to let it go.  Some will have dementia days, some will have cancer days, some will have travel days as my husband and I have our business, and other days may be me just rambling on to figure out my next step in life.

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Stepping Back

I had surgery Nov. 28 on my foot.  That means close to 8 weeks of no pressure on my foot and stepping back to let others do stuff for me.  It has been 2 weeks now, and yes, I am healing well.  But it has also been a hard 2 weeks. I am so use to doing simple stuff without issues.. going to the bathroom, taking a shower, getting something to eat or drink.

Not only have I had to step back on caring for mom, I have had to step back from taking care of the house as I have.  It has been an experience for sure.  I have had a few break downs of just getting frustrated with myself.  Falling from just turning around, losing my balance (36 yrs old and crutches don’t mix).  It takes me so much longer to get stuff done.  I am just now able to go to the bathroom pretty quickly, and that is lifting myself up from the floor up off the step.  I have had to have my amazing husband cook all meals, and for the first week, make all my drinks.  Of course when my son is home from school, he does quite a bit too.  But, for me to have to ask for simple stuff is really hard.  My husband has also washed dishes, been my mental and physical support, medicine picker upper.  My son has been doing the laundry, putting it away, vacuuming, and a lot of the extra cleaning.  I hate to say it, but it took me stepping back to see that they (especially our son) are able to do a lot.

In all this stepping back, I have had to step back from taking care of mom.  We have Visiting Angels coming in for 4 hours a day, Mon-Thurs, while dad is at work.  He has been working half days at work so mom isn’t left alone.  Me taking a step back from mom has been hard.  I know that it was hard for dad to accept the extra help, but the lady we have coming has been an absolute godsend.  She has done some cleaning for mom and dad that I know unless I did it, wouldn’t get done.  But, what dad doesn’t know, its been hard on me not to be in there with her.  I want to help her.  I really do.  But my lack of mobility and the amount of stuff I have to do, its just not possible.  I hate that I can’t be in there.

But there is something that I have learned these last couple of weeks.  Stepping back is not always a bad thing.  It has been a learning experience for all of us.  My husband has learned he can do so much more if he puts his mind to it.  My son has learned what I do in a day.  And it has taught me patience.  Patience is not my virtue. I have learned to take that deep breath because I am getting frustrated with my son not doing chores at my pace.  I have learned that as long as things get done, it doesn’t matter how long it takes.  Now, of course I have learned it pertaining to myself too.  Deep cleaned the kitchen and with breaks it took me close to 2 hours with my son’s help. But, its done.

Stepping back has already been a hard thing to do.  To me, its always meant failure.  It means giving up.  Stepping back doesn’t mean bad things anymore.  It means that you need help, help is not bad.  We are not able to do it all.  We are not meant to either.  I can say that these last two weeks have been a very big eye opener.  Next time someone says they are willing to help you, take it.  Take it.  You are not a failure to step back.  You are not a failure to let someone take over for you.  You cannot do it all.  You need to refuel, recharge.  And the only way to do that… is to step back.

 

When Things Come Together

I can’t remember if I said before, I was having foot surgery.  Well, I had it on the 28th, and its going to be a long recovery.  No standing on my foot for 4 weeks, then after that, light weight.  Which means I can’t care for mom.

Well, I think I also said that I was getting respite care and I cannot say enough thank goodness it all came together yesterday.  Visiting Angels is who our respite care is going through.  I used to work for them and they are a great company.  Between respite care and my dad adjusting his schedule, things are going to be easy for me to heal, not worry about mom, and it also gives mom and dad valuable time together.  Mom depends on him so much, yes, mom depends on me too, but she doesn’t like putting to much on me because of my limitations.

I have to say one thing though.  I have prayed and prayed about mom being taken care of.  To think that I was going to have to put her in a nursing home for this, it would have been terrifying for me now looking back.  I didn’t realize how much I really needed her here.  The night I was in the hospital from my surgery, I really missed having her around.  I talked to mom on the phone yesterday before I got home and it actually hurt me not being able to go in and see mom because I am so limited.

I had my post op appointment today and when we got home, dad asked if I could wait to go in because mom wanted to see me.  Mom has a really hard time walking and she came out so we could talk.  While I have been dealing with everything letting up to the surgery, my actual surgery, and now recovery, I have seen my mom.  My sweet, caring mom.  The mom I have had all my life.  My mom use to be a nurse, and seeing that side of my mom when I needed it the most, its just made me be able to relax more so I can focus on me.

Before I went to surgery, I wrote a letter to mom telling her that its ok to go.  I don’t want her to feel like she has to hang on for me.  But, right now, having her here, I can’t imagine if she went while I am healing.  She has had a mix of good and bad days.  I know the break through pain she has been having is getting worse. I know her life is coming to an end.  I just pray that when she does go, its at night, after a good day.  Like today.  Walking outside just to see me and talk for a few minutes.  She doesn’t realize how much that meant to me.

Things have come together for one solid reason.  Prayer.  Lots and lots of prayer.  I know God made everything come together.  I have had my faith renewed by all of this coming together.  My next prayer.. for my healing to be speedy and when its mom’s time, she goes peacefully in her sleep.

A Day in my Shoes

Today on one of the pages I follow on Facebook, there was an article that was asking caregivers what it was like to be a caregiver.  It got me thinking about  a post and this is it.

My caregiving is split between myself and dad.  Dad gets her settled in the morning, but by the time I get going, she is already needing me.  Pain meds, bathroom trips, sometimes changing pants.. but that is normal.  That stuff doesn’t bother me.  Its what you don’t see, what goes on on the inside of me.

My chronic back pain is already bad, but with mom’s loss of strength, I have to help her get up out of her chair.  Its a team effort between us.  I am generally able to brace myself to help her up, but its still the muscle usage my back gets that bothers me the most.  Its the waking up in pain every morning regardless of the day before, because well, my pain meds have worn off and I am so stiff some mornings that I can’t move.  But I don’t have that luxury of  letting pain meds kick in most mornings.  I get up, let the dogs out, check on mom before I let dogs back in,  get dressed, take my meds and get my day going.  The getting going generally starts with getting her pain meds, getting her drink refilled, then helping her to the bathroom, pull up changes (bending over), putting pants back on (still bending over), getting her back to her chair. All of this takes a good 15 minutes and then repeat generally in an hour.  Sometimes, she is ok for me to come back in my place to finally maybe wake up and let my pain meds kick in. Then generally once I am feeling ok, I work on my place (whatever chores for that day may be), in between of checking on her.  I am in there every 45-60 min.  If I don’t have anything going, I sit with her and we watch tv or talk.

Another thing that gets me… is the pure exhaustion.  Even when you are “off”, you are not “off”.  Calls to be made if not done yet, the other my household chores, I still have to cook dinner, wash dishes, try to finish up cleaning up.  Now, yes, I do have my husband and son that help.  Actually recently, I have been making my son do more cleaning, my husband has a grill now and does a lot more cooking now.  If I do cook, its only just 1 or 2 things. Then I also have to help my husband too.  He has his own issues that he needs help with sometimes.  He is getting better, but there are still days all I want to do is sit and I can’t.  Then at night, the lack of sleep because 9/10 times you are over tired, pain keeps you up, or your brain won’t shut off. So, then when I don’t sleep, I start my day already dragging and I have sometimes just wanted to crawl into bed and stay there after I let the dogs out.

Then there are other days, not so much me personally, but in general of the caregivers world.. sick days.  We don’t get sick days.  You take every precaution to make sure they don’t get sick all while making sure you don’t get sicker.  It is rare that we get an actual sick day… but when we do, we are usually in the ER, or at least a doctors office.  I did get my normal head cold for the year, and thank goodness, I got over it before mom got really bad. This also goes for injuries and surgeries.  Nov. 28 I am having surgery and thank goodness I have things set in place, at least somewhat.  Dad is taking off the week I have surgery, and then hopefully I will have respite care coming in.

I haven’t even touched the mental part.. Anxiety for what could happen when you are not sitting with them, anxiety for wondering how you are going to be able to keep going. Personally, I am mentally worn out from the worrying about mom.  Is she going to be responsive when I come inside in the morning? Am I going to have dad wake me up in the middle of the night needing my help? Then add in.. how am I going to help mom when I am recovering from surgery when I am not suppose to be on my foot ?

The hardest part of all of this…trying to keep yourself together in front of them, when all you want to do is just cry because you know they are miserable, you don’t see who they once were.  My heart breaks everyday for mom.  She has been my rock for so many years, and now I must be hers.  We have our moments.  Like, walking back from the bathroom, she stops, gives me a hug, and say I love you.  That makes it all worth it.  I treasure those moments.

Don’t get me wrong.  I wouldn’t have this any other way.  Mom was there for me day and night when I was in the hospital as a baby. She carried me through many dark days, she has been there for me in more ways I can say.  I owe it to her to take care of her as she did me.  So, this one is for all the caregivers out there.  We all understand each other’s pain, the tiredness, the tears, the joy.  Give yourself a pat on the back, you deserve it, you got through another day.

Why God?

I have asked this question many times in the last week or so.  Mom has gone down hill so quickly this week or so, that we are really worried about her.  Mom’s appetite has drastically decreased, her pain is sky high more often.  I can see she is ready to go.  I have already told her, she doesn’t have to hang on for us.  We will be ok.  Now, I have to find a way to tell dad he needs to say it because one of the nurses I was talking to said it needs to be done.  I ask God to take her home, let her be with her parents.  Its not that I don’t want her to die, I want her to be at peace.  I want mom to be who she use to be.  I don’t see her anymore.  She has died, but only her personality.

I ask God, why have you not called her home? Why are you letting her go through all this pain?  I don’t understand why.  I know He calls everyone home on His terms, but seriously, why is He allowing her to suffer needlessly.  I am losing my faith.  I hate seeing her go through everything she has to deal with.  She doesn’t deserve all this pain.  She has been a woman of God, she had such a giving heart and soul.  She was everyone’s mom.

I don’t understand so many things.  On top of mom suffering, then I worry about dad.  He is so exhausted from working then taking care of mom.  I have a feeling he is going to go not long after mom.

Helping mom today I had reality smack me hard.  I won’t go into details, but I am glad I have a strong stomach.  Because otherwise, I don’t think I could do what I have to do to help her.  Breast cancer is ugly, and its a monster.  And then when you add the dementia in the mix, its like a totally different monster.  I just pray that I am given the strength to keep going.  Otherwise, I have no idea how its going to happen.

It Takes a Village

This is dedicated to my dear friend, fellow caregiver, Ed.  He is the reason behind this post.

I was watching my dear friend, Ed, who sells Younique cosmetics.  He is also a caregiver for his husband, who is 38 and has frontal-lobe dementia.  He always speaks about being kind and supporting each other, along with always saying a prayer for anyone who needs it.  In these videos, there are many caregivers that watch him.  Not so much just to watch amazing makeup tutorials, but to escape our reality.  All of the caregivers have formed friendships, including me.  We have a safe place to talk about our day and we all get what someone is going through.  Circumstances may be different, but caregiving stress is not.

We were talking about how we all have become a family.  I made the comment and the more I think about it, the more it is true.  There is a saying, it takes a village to raise a child.  Well, I believe that this is true for caregiving.  We as caregivers are connected on one single thing.  Our lives as we knew it is forever changed.  I will be the first to tell you, if it wasn’t for the support groups I have found.  This would be a very different journey for me.  A very lonely, stressful journey.  I have developed several friendships over the last couple of years that have forever changed my life.  These friendships are a special type of friendships.  They are forever.  We share the same heartaches, the same stresses, the same joys.  And when the one we are taking care has a bad day, we are all there to pick up the caregiver.  The village is the friends that we make with other caregivers.  The village is family.  The village is the ones who support us caregivers, whether its other caregivers, friends that that been in our lives for a while, or family.   So, this goes out to all the other caregivers, you are not alone.  We are here for you.  No judgement, ever.

Everything At Once

This week has been an interesting week.  Monday I had a podiatry appointment for both my feet, but was mainly for my right one.  I have a “botched” amputation and its been causing me more problems the last few years than I would like to admit.  The doctor agreed with me that it is time to get it fixed.  So, today I got the call for a surgery date.  Nov. 28.  That is 2 1/2 weeks from now.

So what am I going to do with mom??  I have no idea.  Honestly, dad needs a long break and I am not going to be able to care for her.  6-8 weeks recovery time and I cannot put pressure on it.  Mom understands all this, but she is also getting to a point that worries me.  Her pain is high today.  It makes me wonder about putting her in a nursing home for a temporary basis, but I have a feeling that it would be a permanent one.  If her pain continues like it is, I think it will be better for her to be there all the time.  It also scares me that if I do have to put her in a home, that she will go down hill fast.  I have seen it, and I don’t want that guilt if she goes because I put her in a home because I couldn’t take care of her.  It scares the hell out of me to be honest.

So, there is that then there is my family… husband and son.  I am a wife and mother also.  I have to figure out meals, cleaning, and everything else.  I have so much reorganizing to do before then to make it easier for me.  I have stuff coming in so hopefully I can get it all done before then.  And my anxiety is through the roof.  Mom, here, and just general surgery.  Weather doesn’t help either.  Its cold and raining.

I just pray for peace and everything to come together easily.  I know it will.  I am giving it all to God and I know he has control of this.

Purple November

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Much like my post in October about the importance of breast cancer awareness, Alzheimer’s and dementia awareness is in November.  It is also caregiver appreciation month.  I have learned many things since December 2015.  I know that many caregivers, like me, fell into this roll for this disease.  Some willingly, some, not so much.  Some prepared to quit their jobs, some not so much. Dementia in itself is an ugly disease.  But there are different types of dementia, and yes Alzheimer’s is under the umbrella term of dementia.

dementia umbrella

My mom wasn’t labeled a particular type, but from how she is, I would assume she has Alzheimers.  She doesn’t have the markers for what goes on in the other types.  I have friends who are taking care of loved ones with Fronto-temporal dementia (FTD), one of my band mentors had Parkinsons disease, my grandmother had what I believe was vascular dementia.  It is everywhere around us.

Dementia is caused from various things.  Diet and medications are the most common causes of this horrible disease.

Diet causes are from plaque build up in the brain (mainly from fried foods), high amounts of aluminum (used as an additive in cake mixes, milk formulas, and cheese and it is also found in many deodorants), many artificial sweeteners especially aspartame (which is used in many diet sodas and sugar free candy), fluoride from our water and toothpaste and these are just for starters.

Some medications have been linked to memory loss after long term use.  Statins being the main one.  Those include mostly blood pressure medicine.  My mom was on Lipitor for many years, guess what, its one that has been named the main one to cause memory loss.

Diet is not just the main cause though. There are some that get it hereditary, some have gotten it from outside factors (chemicals and cancer just starters).  Also being diabetic has been linked to a higher risk of dementia.

They way we found out about mom was it first started a year, maybe 2 years before diagnosis that her driving was getting worse, her memory started going some, but none of that was really noticeable.  The doctor appointment she had before she got diagnosed, I was able to get the doctor alone and tell her that dad and I had concerns about her memory.  She was repeating herself a lot and I mentioned also her driving was getting really bad.  So, she gave her a standard memory test that they give to all older people to make sure nothing is going on out of the ordinary.  It had simple stuff, remember certain words while she was asked other questions.  One was to draw a clock, where certain cities were, where she lived, and other simple stuff and then was asked to repeat the words that were said earlier.  She scored a 13/30 and it raised so many flags. After that she had ordered blood tests, urine tests, MRIs to rule out anything else that could be causing it.  Everything came back normal.  The day I got that call was probably one of the worst days of my life.  The next worst day was the day she got her cancer diagnosis.

Dementia is an ugly disease that I wish on no one.  No one is immune.  The greatest minds get it (Glen Campbell, my band director that was a mentor), it knows no race, no sex, no income status.  It hits people that would give their last dollar to someone, the shirt off their back, and the most amazing people in the world.

Now, I am going to switch gears to the other part of this month.  National Family Caregiver month. Us family caregivers are a special breed.  We take so much abuse (intentional or not) both mental and physical, financial insecurity, and more often than not, loneliness.  We lose friends, we also gain amazing friends who are also caregivers and those friendships are priceless.  I have made several friends who are caregivers and that makes me know I am not in this alone.  Family caregivers are generally doing this job for free.  We don’t get paid unless there is a miracle through insurances that pay you to become one.  Some have online jobs (like the pyramid companies).  I am a substitute teacher and the only reason I can is because my husband is home and can check on mom when I am gone.  My dad does a lot for mom too.  He works still at 75, and honestly, I think its good for him he will go crazy otherwise.  He does so much for her when he gets home and on his days off.  I appreciate what my dad does for her.  But I know he is tired.  There are days that I don’t get much sleep because I have to help her late night with dad.  Us caregivers are generally zombies by the end of the day.  I make sure she is ok, pain free, get her stuff if she needs it, not to hot or cold. I am in and out of the house quite a bit and that some days, it is just to much.  I wear down faster from the mental and emotional than I do the physical some days.  Especially when mom makes a downward slope.

I am blessed to be able to do what I can for mom.  I know that there will be a day when we have to put her in a nursing home because her mobility is getting bad.  She has fallen twice and both times, I have to call for a lift assist.  Dad and I cannot lift her.  She cannot put weight on her leg to get up due to the cancer in it.  I know I do and dad probably does feel a sense of obligation to take care of her.  She was by my side when I was a baby, sick, and nearly dead a few times.  She cared for me when I was down, hurt, or just being a brat.  She took care of us as a family, cooking meals, keeping a clean house, giving advise, and being a friend. It is our turn to say thank you.