caregiver – Natalie Nicole Blue

I received this email and these photos on Monday which sent my feelings pouring out of me. My Dad and I rarely cry when talking to each other because we have to try to be strong but this week I sobbed to him on the phone. We are coming to the end of the road. The end of our journey and the end of our time with my mom. And to be completely honest, we don’t know what to do. Below is an update from my Dad and how he continues to live through Alzheimer’s.

****my dad asked me to proof read this for him and fix any grammatical errors but I think there is beauty in this raw copy. Please forgive any mistakes you may find and understand that this was probably written with wet, foggy, tear filled eyes.

Caregivers are such special people. People that have the endless compassion and the empathy to understand that we all are on the same path, and we all have the same destiny – Sadly some’s destiny reaches the end of the journey before others.

As a Caregiver I learned I needed to dig deep into my mind and heart to find the understanding, find and open the selfless patience, wrap my arms around the meaning of empathy, and most of all confirm my complete acceptance of this is what it is. Make the best of it … Why not ?

Family is so so so affected – Hardest part of this Alzheimer’s Journey is for the Family – After acceptance of that “It is What It Is” The Family must continue on trying to understand how to continue, stay one step ahead of the unknown. Who will step up to the plate and how to be in charge. The reality of deciding what is the best avenue to take for the loved one. I truly believe that the one on one care given by a Family member is the best way to go.

I learned how to try to keep 1 step in front of instead of reacting I keep thinking of how to handle what is coming in the next pages of the book. Being prepared to continue through the chapters of our journey is hardest as the thought process turns toward the time consuming task at hand of taking care of the loved one and leaving little time for the Caregiver day to day needs and cares.

Faith in good sayings have helped me tremendously – I make my own uplifting sayings about this journey that enables me to strive toward them. Gotta love – ” Smiling makes me Smile ” It is so true really I smile driving around all the time. So Blessed – And – ” It is not what happens to you – It is what You do with what happens to you ” Get out of here – That’s one saying for sure to live by.

Country music for me is still and was a great escape for my mind to wander and smile. Most of the Country songs have enjoyable lyrics about quite a few silly life’s situations and are uplifting.

In life I have been Fortunate Not Lucky – The difference is I choose my path by opening doors along the journey. Some doors lead to other doors. Most of the time I didn’t find doors just walls. These walls needed to be climbed or gone around to find the new door on the other side. I always tried to keep moving forward looking forward not in the past. And you have to find the strength and nerves to walk through doors with-out knowing what is beyond.

I am so Blessed by being able to find the resourcefulness, find the ability, let out the ideas instilled in me of keep on dreaming – Dreaming is a very strong way to for me to keep striving and moving on. And accepting that tomorrow will be another great day waiting for me to enjoy this journey.

I have had to file a lot of my memories and learned to go back when I choose to. No need to go through negative times. Uggghhh so hard to go back in the file drawers of memories. Don’t get trapped in the pity party “that these memories are now only mine” because your loved one who helped create and share so many of your life’s memories for so many years doesn’t remember. They can’t laugh, enjoy and share them with you anymore. It gets better in time but will always be there. Shut that file drawer.

Be honest with yourself – This is happening and this is real. So pull up your big boy pants and figure it out so it doesn’t figure you out first. If you get knocked down – dust yourself off and get on with living.

Attitude is self-controlled. I prefer to see the good all around – I made a decision many years ago to be positive, to be proactive and to always keep moving forward … I learned it is easier to live in the now.

You have to learn complete acceptance of “Make the Best of What you Have” and “It is what it is”. This new and always changing journey has no road map. Doctors don’t know – Nobody knows. All I know is that I did the best I could today and will do the best I can do tomorrow. That way you can feel good about yourself.

Sure things don’t always happen as expected but by moving through them with the mind set of “Whatever” you start to understand what really matters in your life. Amazing how that will let the Stress Go – As what is it that really matters in your life.

Get up every day on the right side of the bed … Do the best you can do and then enjoy you did the best you can do – So if what if you only had time to get 25% of it done. That’s 100% of 25% done. Smile and know you did the best you could.

The Responsibility shouldn’t be a burden. Turn your thoughts around and think of how well your loved one is doing. As it really is happening to them not you. Empathy leads to acceptance and acceptance leads to devotion and devotion leads to unconditional love. Unconditional love leads to a much easier journey. This journey is happening, it is real and it is now a major part of your life. Embrace your journey by knowing you would want the same care given to you if you were in this position. With time we all will need the help, empathy and compassion of a Caregiver … Special people indeed.

Caregivers have been chosen for the special job of comfortably helping others transition to the other side of the rainbow. Caregivers are instilled with the love and have found enjoyment by help others.

I have learned when I feel I have way too many things to handle I end up prioritizing and move forward with completing my highest priority items – Because I know I can’t get everything on my shrinking plate done – And then there is what pops or poops up keeping me on my toes and testing my reaction. Ahhh another saying ” Whatever ” I understand the true meaning. Situations happen that are completely out of my control. Could I have done something to change what just happened? If so then learn from it and maybe it was my fault for no thinking ahead to have been able to make it not end up this way. Not feel guilty but learn from it. Really now almost everything washes up – ( well maybe not everything – we can talk later on that ) Most things clean up.

This life journey of yours is not a dress rehearsal – So best way to go is accept, strive to enjoy the ride, look around there is beauty just gotta find it. Smile as smiling will make you smile Come on now smile … Ha see I told you …

I believe in the idea of “Find and focus on the good surrounding you” Good mind set attracts good people. Negative mind set doesn’t attract anything good. Who wants to be around someone who projects poor me, feel bad for me. No one will ever know what you are going through until they have to face the same journey. So get over yourself, your situation. This is not a dress rehearsal. You will never get yesterday back again – So make the best of today. Always Remember:

“It’s not What Happens to You – It’s What You Do with What Happens to you”

Stay steady on the path and look at all the abundant possibilities the Lord has made available for you. I am sorry that this has happened to you. Just you don’t feel sorry it has happened to you and this long Journey will be easier.

John H

DISCLAIMER: Have tissues nearby!

The following is a four page blog post from my incredible, loving, selfless, and tender father John Hamill. You are the best example of love there is dad. You amaze me more and more each day. Thank you for everything you do for my mom and for me.

These are his tips and tricks of how to care for his wife who has Alzheimer’s.

I really feel the need to reach out and try to help others in our situation – and would love to hear your experiences and ideas too – Thanks for being here … I have been my wife’s caregiver for the past 5 to 6 years, other then having a gal come in for a couple of hours and watch her so I could go out to an appointment for work – Our daughter, who is 23 now, gave me a 3 day break to hit the lake with the good ole boys I went to school with – But ( not complaining – just explaining ) the rest of the time I have been with, and taking care of, my love and life partner Pammy – Through-out this journey I have stumbled many times, I have questioned and have had to pick myself up by the collar and remind myself to always keep moving forward … A while into this journey most of our friends stopped coming by – ” you find out who your friends are ” Now I have come to understand and accept that most of them couldn’t handle seeing my wife so so different and I believe it really hit home for them – made them uncomfortable and wonder if they could handle doing what I have decided to do and go down this long road with their spouse … I can’t blame them or be mad at them as they all have situations and problems of their own and their life to lead and handle …

I try not to go back in time at all – So remembering all of the things I have learned and done to get through this is still there, but behind a closed door … I have gone through her accusing me of having numerous girlfriends ( like I had the time ) I have gone through how to get her to eat, her not sleeping at night, her incontinence – I said to myself, “Oh Lord if I have to go through her peeing in bed, cleaning sheets and the floor at 3 in the morning, and pooping in her panties ( depends ) show me the way I can get through this.” … I learned to put her on the potty 5 to 6 times a day, once for sure before bed and when she wakes up – She is a walker and used to be up quite a bit more throughout the night then – I learned that when she gets up she usually has to pee – so I turn on a few lights and let her walk around and then in a few minutes put her on the potty – I have found that when she is sitting on the toilet it is the best time to get things done – change her pants, her panties, brush her hair, clip her finger and toe nails ( she hates nail clipping and hair brushing ) and put lotion on her legs … I learned that you wipe gals from the front to the back – very important as we don’t want any yeast infections or other problems down there and it is really hard to get near her privates … I cut her depends (diapers) so the waist band is not so wide, more like a bikini, so she won’t get a rash on her tummy. CaRez cream works great to prevent it, if needed, and Sarna Lotion is the best for a rash that there is- Sarna stinks but will take a break out rash down to smooth in minutes – I cut all the depends (diapers) at one sitting and be done for the week and ready … I take a small duffle ” bag of tricks ” with me when we go on outings that has a change of clothes, sandals, wipes, panties, a small blanket, water, and some snacks – I learned that you can take her into the men’s room to go potty – I went into the Ladies room once and that was a bad idea – the guys don’t care but some kinda wonder for a minute then move on …

You will need to learn to not take anything she says to heart … My wife never swore in her life and she sounds like a drunken sailor at times and calls me every name in the book – One of the hardest tasks you will have is when you have just done something good for her and she has no idea what you have done and no appreciation for what you are doing and hates you – Always remember it is not her, it is this awful disease. One of my favorite sayings is, ” This too will Pass ” and it will … I don’t want to come across sounding like an authority on this – I just really want to give back and help others … Let me know to shut up if I get to be too much …

I still catch myself getting mad – every once and awhile I do get mad and can’t handle her anger and meanness – Then feel bad and guilty I got mad and growled … I have learned that you have to indirectly direct – Lead them to what you want them to do – My wife used to break my house plants and pick the flowers ( I figure that was her way of enjoying them ) so I went out to dollar store and got some fake flowers and put them around so she would focus on those and leave the plants alone – It worked for me and she walked around with the fake ones instead – every once and while still doing the plants – Pam used to get into the pantry cupboard and pull things out and stick her fingers in the peanut butter jar and munch – So I turned the labels around facing backwards and put them to the back and sides and then put a little plate of plastic open container with nuts and dried fruit right in the middle – she would go straight to that instead – Indirectly Directing –

My wife is a walker, up all the time – She wouldn’t eat sitting down – So I put a brightly colored dish towel on the counter – making it her place to find food – and put fruit, nuts and juice there … She got used to that was her spot to find food – She ate breakfast, lunch, dinner, and snacks walking and standing, – who cares if she didn’t sit, at least she was eating – the old ” Whatever ,” it doesn’t matter.

– I have found that saying I love you to my wife a bazillion times a day not only helps reaffirm my love for her but she really doesn’t have much to come back at me with – I always ask her to help me to help her when I am doing things – She hates taking off her tops – So I am always asking her for help to help me – consequently she sleeps in what she wears for a few days other then changing her panties and pants. It’s the same LL Bean fleece sweatshirt and top – I try to give her a shower twice a week and that usually is a scene of her tearing up and me asking for her help so I can help her – I always tell her that we are almost done even when we have just begun. I tell her I love her and do a silly little kiss on each cheek and talk french to her which seems to redirect her well as she tries to repeat some words – In the beginning we had to cover up mirrors ( butcher paper and masking tape worked well when we were staying in hotels – other then explaining to the housecleaning folks to leave it up – sheets and push pins at home worked ) we had to take all the family pictures down as she would talk to them and get angry – she would talk to the reflections in the car windows in the garage so I would roll em all down, and then she found the side mirrors – she would get angry at plate glass store fronts walking by so we would walk on that side and block the view the best we could … This too passed as it was just another phase in the journey … I let her start talking in the mirrors again as long as she didn’t get worked up – She still to this day talks, growls, and laughs in the mirror at herself – I have found that Yoga pants are the easiest and cheapest pants for her now ( I still have all her clothes in our storage – not ready to go there yet ) She is a shorty, 5’5″ and at 100lbs has lost a lot of weight, muscle mass, and fat so she needs to stay warm and zip up fleece sweatshirts work well … They have multiple colors and the Yoga pants come in different colors too ( I got sick of having her looking dumpy in her over sized, too big for her, sweats ) Got the Yoga Pants at Essential Apparel on line at like $15.00 each – Only thing is I have to hem em up so I bought a sewing machine at Target. It’s a little time consuming but I measure the inseam, chalk it, and I use a stapler to hold the hem in place then sew em up and cut the long portions of from the inside … She isn’t drinking water as much now so I give her Gatorade to keep her hydrated and she will go through 2 to 3 mid size bottle a day … I took her off all of the psychotropic drugs as they didn’t do Jack for her – Now I have her on one 0.50 milligram of risperdal in the morning for agitation – I took her off that too at one time for about 8 months but she started getting to be an angry elf – I have her on some homeopathic and natural things to keep her on an even keel and can explain them to you when you get there … Pam hasn’t seen a doctor in over a year as she is healthy other then the dementia and AZ … Really all the doctors can tell me is she is progressing – they have no answers to how long, whats next, or what should I do … Seems they just like to prescribe pills – we went through the trying this, and trying that, at the beginning pretty much to no avail … You will know your wife much better then any doctor ever will … I tried taking her to a day care center for AZ folks but she was the youngest one there and was going through the look in the glass reflection angry period – she wouldn’t eat, couldn’t converse, wouldn’t join in groups, and the guys were kinda all over her – So it lasted about 2 months of 2 times a week of me feeling like I needed to go rescue her – It was expensive and I truly believe that the one on one she gets with me is so much better …

PS I ditched the bra a long time ago as that was not gonna happen – blouses with patterns help with nipples as my daughter was always embarrassed when they showed … Using a coffee cup for her Gatorade now easier for her to grip and the Gatorade gives her some more calories … I carb her up pretty good cause she is a walker and used to give her ensure till I read all the crap that is in it … Tried blueberries, coconut oil, walnuts and fish – but Pammy was to far into it to really help – Maybe your wife could benefit from them though …

I had to make our house into a safe house for her – That way she could roam and I didn’t have to get out of bed every time in the middle of the night … I moved the knives to the garage, took the knobs off the stove and oven, and put one up in a cupboard to use when I needed it … She started getting into cupboards so I took the handles off and just opened them from the bottom or the sides. Same with her opening up bedroom doors – I just took the handles off and left one in the linen closet to grab when I needed to get into that room … Took all the drugs and cleaning supplies out of the bathroom and made a cupboard in the garage with a latch for those – It was a good exercise in how many stupid wooden spoons do you really need and why do I keep moving these pans to get to the pans I really use all the time – Get rid of em – make your life less complicated … I kept a journal for months before we sold our house 5 months ago and moved … It helped looking back on her patterns for bowel movements and I rated her 3 to 4 times a day as to how she was dong on my angry scale of 1 to 3 with 1 being the best – That way I could see if the natural items were working for her or not and if I took her off a pill was she okay after a day or two or not effected … kinda abbreviated things as to food, fruit, etc to see if maybe richer foods were effecting her as I still cook – as I was in the restaurant business for years as a cook … More soon…John H

Tag: caregiver

Dad: How to live through Alzheimer’s

Amazing Love — John Hamill