Everybody Needs a Little Time Away

I'm happy to report that we survived the week that Dad was on vacation without any major incidences!

I think that this trip was a big eye opener for my brother. He insisted that we didn't need caregivers while he was there; he was working from home on his computer for the week. I told him what we were dealing with, but until you are here to see it firsthand, I don't think you can really understand. I think he mostly just thought he needed to be there to make sure there wasn't a fire or big emergency; much has changed since the last time he was here. Needless to say, I had to call the caregivers back to come in and help for a couple of those days. Natalie and I spent a lot of the day there as well, but it's difficult to keep the kids cooped up in dad's house all day (there isn't much for them to do there), especially when Joe was trying to work, so we had to get them out of the house for at least a little bit each day. All in all, Mom was safe and taken care of and Dad was able to go and have a good time away from the stress and sadness of his daily life. I am really grateful that I had Joe and Natalie here for the week to help out, if for nothing else than for my emotional sanity!

After dad returned, I went home with Joe and Natalie for a week. We started this tradition a few years ago-to spend a week together at each of our houses every summer. It gives the kids time to bond and play and it gives Natalie and me the chance to sew, stay up late watching movies and just hang out! Usually I drive out there for a week and bring her and the kids back with me, and then Joe will drive out to spend a long weekend with us and take his family home. This year it worked differently and most of our time here was watching Mom, so I was really looking forward to our time in Arizona.

It was really refreshing to spend a week away. Although I was still on the phone every day handling some things with caregivers and Mom's doctor/nurse (post to come on that topic), I was able to refresh and spend time with my best friend. This has been a very difficult summer for me. With Mom's disease progression and having to do things I never imagined I'd have to do, having the kids home full-time and fighting with each other, and me deciding a few months earlier to go off of my anti-depressant (probably not the best decision I've made), I have been overwhelmed emotionally. I don't like talking about the fact that I had to go on anti-depressants a couple of years ago, but it is what it is. It's a sad reality for a large number of family caregivers. The truth is, I've been extremely emotional. It seems like everyday I am on the verge of tears and probably once a week I end up with a crying fit. I have felt stressed out, tired, discouraged, angry and lonely...to name just a few emotions. One close friend of mine remarked to me that my countenance has changed over the past few months. Although it's hard for me to hear that, she is right. Many days the despair and grief are almost too much to bear; it's hard to see the sunshine with the dark clouds looming overhead.

All this to say, I've really needed my best friend. My family likes to tease Natalie and me for being so outspoken on our BFF status. We like to have fun with it too (if they're gonna tease us, we're gonna annoy them!) and we've made BFF shirts and bought matching outfits and had photo shoots with it all. We might be a little crazy but that's okay, we have fun together and sometimes I just need to laugh. They can make fun of us all they want, but they don't really understand our relationship. The truth is, I feel like Natalie is the one person who really "gets" me. This isn't to say that my other friends aren't great; truly, I've been blessed in the friend department and I have a lot of great friends in my life who are there for me when I need them. And let's not forget to mention my husband; I'm really lucky he puts up with me. I just feel like Natalie and I get each other; we have a special connection. We've both been through hard losses, some of which we've gone through together, and we understand each other. I don't have to tell her how I'm feeling, she just knows. We both know what each other needs to brighten up the day and know that we are there for one another unconditionally. I don't have to tell her that the reason I am feeling edgy or moody or sad is because I am mourning my mom; she just knows. I know it sounds really corny, but if ever there were such a thing as friend soul-mates, we would be it! She loves me, flaws and all! And I feel the same about her. I am so blessed to have her in my life.

Coming home from Arizona was hard. Don't get me wrong-I was happy to be with my husband again, I missed him while we were gone. But now I miss my bff. In a perfect world, we'd be neighbors and we would see each other everyday. Now that I'm home, it's back to reality. I feel like I'm back to where I was before she came; alone in managing these complicated emotions of caring for my mom. :(

All Good Things

They say that all good things must come to an end. This week we officially "put an end" to our church volunteers.

For the past 3 years, wonderful ladies from our church have been volunteering their time to come over and sit with mom. When mom and dad's ward saw the need, they filled it. Every Sunday, the "compassionate service leader" passed around a sign up sheet in the women's auxiliary (called the "Relief Society") and women from church signed up for two 4 hour shifts throughout the week. Additionally, if we were ever in a jam, we knew we could count on them to help us out. This was such a huge relief for us, especially in the beginning when were first discovering that Mom needed some extra supervision to keep her safe at home. It was a huge relief and stress off my back (as the caregiver coordinator) to know that there were those two periods of time that I never had to worry about. I knew that they would always pull through for us.

About 6 months ago, our wards changed and Mom and Dad were merged into my ward (our church operates in boundaries, much like a school district system). This meant a new coordinator in Relief Society and a different group of women. While the ladies in the other ward had come to love Mom and looked forward to their service with her, this new group wasn't as familiar with our routine and need, so it's been more of a struggle to get people to sign up (or show up when they do sign up). I don't fault or blame anyone, it is what it is and it may be a lot to ask people to sign up for. Dad and I have been discussing the phasing out of volunteers and knew that it wouldn't last forever.

As expected with this disease, Mom is advancing in progression. In some ways it is easier (she spends a lot of time in bed) but in some ways it is much harder, especially now that she is diapers full time. We've been very fortunate to have no issues on our volunteers' watch, but I know that we have just been biding our time. It will inevitably happen that Mom has a big mess while a volunteer is with her, and I wouldn't expect them to have to clean up that mess.

Taking all of these factors into account, we have officially called off our church volunteers. It is bittersweet. I have come to love many of these women who have so selflessly and compassionately loved and served my family. I know that many of them have come to love and care for my mom as well (and they are certainly welcome to come visit!) On behalf of my family, I want to give our sincere gratitude and thanks to all of the women over the past few years who have stepped up and helped to ease our burden. We could not have done this without you! We love you and will forever remember the great service you gave to us in our time of need. I don't know that I can ever repay each individual back, but I hope to repay it back by giving others service in their time of need. Love, service and compassion is what makes the world go round!

The Unfavorite Child

I am not my mom's favorite person these days.

Not to say that I ever was. But I think it's safe to say that she liked me pretty well in the past :)

One of the things that we knew would become an issue with this disease is hygiene. This was one of mom's strong points in the earlier stages. In fact, even when mom failed her tests at UCLA, the nurse found the positive for us by saying,

"At least she still takes good care of herself and doesn't need help in the area of hygiene."

At the time, I couldn't even imagine mom needing assistance with her grooming because of her rigid routine (which included showering and toileting-at very specific times) and her obsession with her appearance. Sadly, mom has been losing these abilities little by little over the past several months. I've written a few posts about her diminishing hair and make up skills and the irregular showering. Unfortunately, over the matter of a few months, it has gotten to the point where mom will go all week without showering, until she is forced to get in. Her resistance usually accompanies complaints that she doesn't have enough make-up or a blow dryer (despite the fact that she has both). She doesn't want to mess it all up since she feels she doesn't have what she needs to make herself presentable after the shower.

My dad never complains and rarely asks for help with anything other than supervising mom. He leaves the tougher jobs, like grooming, for himself. After a hard day at a labor intensive job, I know the last thing he wants to deal with is having to forcefully get my mom into the shower. Not to mention that by showering her at night often disorients her into thinking it's morning time (which means dad gets little sleep at night!) He is out the door early in the morning, oftentimes before mom is even awake, so showering her in the morning is tough as well. I decided to make it part of my job and (hopefully) take some of the weight off of dad's back.

Over the past couple of weeks, we've implemented a new showering routine for mom. Every other day, mom gets her shower, whether she likes it or not (I would say not). Of course it isn't as easy as simply telling her to get in the shower. It was tricky at first, but I've pretty much got it down now. Sad to say, but we actually have to remove her clothing from her (she won't do it herself), much like with a little child, to cue her that it's shower time. Some days she will plop her body down on the bed and I have to pull her pants off while lifting her body (that's a good work out!) Other times I can get her into the bathroom first and remove her clothes there. Once I manage to get her clothing off, she usually protests and sits herself firmly down on the toilet, waiting for me to go away. I pretend to leave and crack the door shut; she stands back up, poking her head out the bathroom door to see if I'm gone, and that is when I take my opportunity to guide her into the shower, disallowing her to sit down again (sometimes that results in a naked bear hug as I move her into the shower!) The other day, no sooner did I start taking off mom's shirt than she lamented,

"I don't want you here, I wish you weren't here!"

Later that day, while visiting her sister, she mumbled complaints to Ellen about how I shouldn't "see her naked or plain Jane." I know I am not her favorite person these days but that's okay. It doesn't hurt my feelings. I know that the "real" mom, lost deep inside her somewhere, appreciates all that we do as a family to care for her and keep her as comfortable as possible in her own home.

I'm not writing this post for sympathy or for praise. As much as I hate what this disease has done, I am happy to help my mom. I do not resent that [help] in the least. Neither am I doing anything that millions of other unpaid, family caregivers do day in and day out. Unfortunately, this is a part of life (I would've been happier to deal with it much later in life!) and there are many other families who suffer far worse with their loved ones. Lucky for us, mom doesn't have many of the aggression and behavior issues that many people with dementia suffer from. I don't know if it will come later on, but I'll be happy if we skip that part! The only thing I do regret is making mom feel uncomfortable. While I know that it's become necessary to assist with her bathing, I know she doesn't like me seeing her in the nude. I feel bad about it and try to look away when I can but there's really no way around it. So it goes with dementia.

While Dad Was Out

Last week, my dad flew out to his home state of Connecticut, with his 4 sisters, to attend their cousin's wedding and have a little family reunion. He was gone for 8 days and 7 nights. It was a very much needed break for him and I'm really glad he got to go. I know he worries leaving mom behind, but he knows that he can count on us to help him out.

I've watched mom plenty of times in the past when dad has gone out of town. We have the usual routine of caregivers during the day and between my sister, her husband, my husband and myself, we rotate turns spending the night. I'm finding it a bit more difficult as her disease progresses. She is to the point now where she needs some help getting into the shower, so that was one of our jobs while dad was out-making sure she showers. It's not an easy thing to have to disrobe your parent and force them into a shower. The first time I had to do that, I really felt like I was violating her in some way. The first time is the hardest. After that, you learn what is necessary to do and you just learn to it. It's probably more difficult emotionally than anything else.

It's hard to put into words all the emotions that I felt during this week of caring for mom, but I was glad that I was able to come over and help my mom (and dad). While it's been difficult to have to take on a parent role with my mom, there were some tender moments as well. One night, mom was laying in her bed and I went to lay down beside her, just to keep her company (and maybe for my own comfort as well). She was mumbling that her face hurt. She hasn't been washing it well and I discovered that she is using her body wash as a facial moisturizer; needless to say her skin is dry and peeling. I knew she would fight me, but I decided to try and wipe her face with a cleansing cloth. At first, she protested and pulled her sheet over her head and began laughing hysterically, which made me start laughing as well. Eventually, she let me finish wiping her face as the dead skin wiped off in the cloth. I brought over her face moisturizer and began rubbing it into circles on her face. She initially started swatting my hand away, but she finally calmed down. She laid her head back and closed her eyes as I rubbed the moisturizer into her thirsty skin. For a quick minute, I thought she might have even enjoyed the nurturing.

There were definitely ups and downs of the week. I felt a huge weight of responsibility on my shoulders while my dad was gone. Even though I had help from other people, ultimately I felt the most responsibility for her. I was in charge of coordinating the caregiving schedule so I had to worry if people would show up or not and fill in when people cancelled at the last minute (which I usually do every week anyway, but not 24/7). It's no different than being a parent; your children are on the forefront of your mind constantly, and that's how it was with my mom. But with the responsibility of caring for someone also comes a growing love for that person. My heart swells with love for my mom. It is so hard to balance my family and kids and all of my other life responsibilities and I'm not perfect. By Thursday night, I admit I did have a little bit of a meltdown and was feeling discouraged. But I think that comes with the territory of caregiving. Caregiving is hard and it takes a lot out of you, and there are times that you have those meltdowns, but it doesn't change your love for the person. It made me realize and appreciate more of the weight that my dad carries around with him every day. I am really glad that he was able to have such a fun week with his family; it is well deserved.

I feel impressed to say one more thing; someone made a comment to me that I want to address. It was insinuated that I write about things to put it out there and show off to everyone what I do for my mom. That insinuation really hurt my feelings. It's often difficult to write the things that I do and I hesitate sometimes to do it. And I've always had the personality that worries what people will think (though I'm learning, with age and experience, to get over that). I write for a few different reasons: to educate about the disease, to help others in their journey and because writing is therapeutic for me. People leave me very kind comments which I appreciate, but it sometimes makes me uncomfortable because I really don't feel like there's anything extra special about what I'm doing. I think it is what anyone would do. I do not write to seek praise or to get a pat on the back, simply to share our journey with others.

Summer Days

Summer is here and I've been absent from my blog again. I've been trying to keep a steady balance of keeping the kids busy, helping with my mom (and filling in for caregivers who are gone, including my dad!), working for The DEANA Foundation, keeping up on household responsibilities (a never ending and all consuming task), running to and from swim practice and meets, and working on my new "calling" for church. Oh, and did I mention that my niece-daughter is getting married next month? Yes, I've been planning a wedding as well. My plate is definitely full but those of you who know me, know that I wouldn't have it any other way. At least I never have time to be bored! ;)

A couple of years ago, when I started my Mondays with mom, I wasn't very excited about bringing my kids along with me during their summer break. I was worried that they would be bored or complain about having to give up parts of their vacation to come and sit with grandma. Oh how my perspective has changed! It's true that we've had to turn down some play groups in order to keep our commitment to being with mom on Monday. And I'm sure there are other places they'd rather be. Don't get me wrong-if it were a perfect world, my mom wouldn't be suffering with this horrid disease and, consequently, we wouldn't be spending every Monday caring for her. Rather, we would be planning fun summer outings with her! But over the past couple of years, I have learned to appreciate and value the time that we spend here with her. There are definitely days when they get bored and drive me nuts. But even they are learning to appreciate that Mondays are the day we take care of grandma.

My daughter, Aubrey, is a very compassionate soul. Many people know her feisty, spirited side but don't always get to know this loving, sweet side of her, which I adore. Oftentimes I overhear her talking to her brothers about how much grandma loved them, how she used to be so excited to be a grandma (sentiments that I've shared with her). I hear her and her brothers wishing away the dementia. Sometimes, she will be the leader in picking a chore to help grandpa around his house (not sure if he ever notices).

Lately, I've been observing Aubrey's interactions with my mom and it warms my heart. Every time we come over, she now tells grandma "hi" and gives her hugs. My mom never hugs her back or responds (unless it is to brush her away) but Aubrey understands that it is the disease causing her to behave that way. I encourage her to keep on hugging grandma and telling her she loves her anyway. My boys are not quite as affectionate as my girl, but now and then they will follow big sister's example and give grandma hugs and "I love you's."

This morning, I went into my mom's rom and lay beside her on her bed. I often do this; she usually hides from me underneath her sheet and begins rambling about how dad doesn't support her with money and credit cards, followed by promptings for me to leave her room because,

"You can't see me napping."

I let her ramble. I just like to be next to her. I know everyone says she's not my mom anymore; that the person she once was is gone. And I'm not in denial about it. Yet, sometimes it gives me comfort to just lie beside her and hug her. Sometimes she will push me away, other times she will laugh at me, and many times she will simply ignore my affections altogether. Today, while I was laying beside her, my sweet daughter came into the room and mimicked what I was doing. She laid down next to grandma and gave her a big hug, saying,

"I love you grandma."

For the next little while, we sat beside my mom, giving her hugs and listening to her ramble; Aubrey repeating her "I love you's."

There are many times when I feel like I am messing up on this whole parenting thing. But moments like these, when I see the love my children have developed for their grandma, despite their lack of knowing the "real" grandma, warms my heart and gives me encouragement. I'd give anything to have my mom back; since that isn't going to happen, I continue to look for the opportunities to teach my kids of love, service and compassion. I can't think of a better way to spend our Mondays!

Foundation Update

Every now and then I like to give an update on all that is happening with The DEANA Foundation.

I've been working like a mad woman on this foundation. We've created an official Facebook page and ever since then we've been working really hard on getting our name out there; I feel as though I have another unpaid job. Ha ha. But I am so passionate about the cause that it hardly seems like work. I have an awesome board (4 other members besides myself) who all have strengths that are truly benefitting this foundation.

We are officially an incorporated charity and have filed for our non-profit status (just waiting on the IRS!). We have a beautiful logo that my cousin, Sam Harrington, designed. Note that he used my mom's silhouette. Amazing.

Our official website is up and running. We have plans to update it, but wanted something in the meantime while we raise enough funds to get it professionally detailed. The website address is: www.thedeanafoundation.org

We've hosted our first successful fundraiser. We had a pizza party at a local restaurant and we raised over $500 for our foundation. I was touched by the show of support from family, friends and our community. We have already began planning for our big opening event, which I am SO excited about. We are waiting until we've obtained our non-profit to set a date, but we are aiming for the end of August/beginning of September.

Right now, we have launched a campaign to help really get us up and running. We have filing fees to cover, our website, insurance to obtain, a venue to book for our "grand" opening event and other overhead costs (business cards, advertising, merchandise for our shop, etc). It takes a lot to get going, so we've created a campaign on indiegogo. Basically, we have 40 days to raise $3,000. We are currently at $400 and have 33 days left. I made a beautiful slideshow that is featured on our campaign. If you haven't seen it yet, visit our campaign and click on the "gallery" tab. You can do that HERE.

We have so many projects and events underway right now...I won't bore you with all of the details, but things really are coming along quite well. My vision for this foundation is to reach and help families across the globe. As we are just getting started, we will likely be helping those in our community first (that's where we receive most of our support right now). BUT, I have plans on how to expand this foundation to reach everyone, and hopefully that will happen very quickly. It will require some help from others across the country, but I'm happy to report that I already have contacts lined up to help in other states. Eventually, I want to see different chapters of The DEANA Foundation across the globe, much like the Alzheimer's Association. It may seem like a big feat, but we will get there, even if it takes us a decade or two to do it! If anyone is interested in volunteering and helping The DEANA Foundation in any capacity, please contact me or visit our website to learn how!

I want to thank everyone who has been a support to this foundation thus far. For all of the likes and shares on facebook, the donations, the participation in our first fundraiser...the list goes on. We could not do this without your help and support and we thank everyone who has contributed to that. Thank you, from the bottom of my heart!

The D.E.A.N.A Foundation

A couple of months ago, I posted big news here on my blog. We have had a few really great board meetings now and are well on our way to getting this foundation established! I want to give you all a quick update on the progress we've made!

One of our first items of business was to name our Foundation. We wanted to choose a name that represented our mission while also paying tribute to the person who has inspired this foundation: my mom. We tossed around several ideas and the name we have elected is The D.E.A.N.A Foundation [The Dementia Expense And Nursing Assistance Foundation].

The purpose of this foundation is as described in our mission statement:

"Our mission at the Deana Foundation is to provide financial relief to middle class families affected by dementia. We understand the emotional and financial burden this disease places on families caring for their loved one. We strive to ease these burdens by providing emotional support, resources, and caregiving grants."

Establishing a foundation is not a small undertaking. This isn't an amateur idea that came to me in passing. I've spent many hours pondering and researching how to make this vision happen (as have the other board members). This is going to be a legit foundation and I hope to reach thousands, even millions, of people down the road. There are a lot of formalities in establishing a foundation (I won't bore you with all the details); I'm excited to say that we have completed the first big chunk, which is to write the foundation's Articles of Incorporation and by laws. I am forever grateful to our board member, Melissa, who has spent a lot of time figuring this part out. Because of her hard work, we were able to sign and mail in our Articles of Incorporation to the Secretary of State last week! This step approves our foundation name and establishes us as a non-profit charity. As soon as we hear back, we will be ready to file our tax exempt paperwork, get our taxpayer ID number and be ready to get this party started!!

Some other things we are working on include: a foundation logo, vision boards for our website, marketing and brainstorming ideas for our grand opening event. We still have a few seats open on the board, if anyone would like to serve with us! Living closeby is great but not necessary; in the future I would love to see this foundation reach across the country!

That's my update for now. I just want you all to know that things are moving along...it wasn't just an idea that has passed! It is very much happening. It's just a long process to get going. Please continue to share my blog on your social media sites and with those around you and help to get the word out! I am very hopeful that we will be able to make a difference in many lives through The D.E.A.N.A Foundation!

Rest For The Weary

We've known for a while now that the time has come to find outside help for mom. Some of you might ask why we haven't done that yet; after all, I've been setting aside money from fundraisers for the past year and talking about it even longer. Let me break this down for you.

Average In-Home Caregiving Company = $20 an hour (average)
x's
40 hours a week (that's just the minimum)
x's 4 days a week
=
$3,200 per month

Even with the fundraisers I've done, I don't even have enough money saved to pay for one month of caregiving.

Frequently asked question: Isn't there some kind of assistance that will help pay for an in-home caregiver?

Yes, IF you are low income and IF you have no assets (which includes a house).

If you are well-off, you can afford to pay for a nice company to come and care for your loved one.

But, if you are stuck in the middle class, there is no help!!

Story of our life. I could write an entire blog just on this topic, but I'll spare you the politics. The fact of the matter is this: if you are an average, middle class family, there is no help. You have to have nothing to get anything in our society. The most we can hope for is to find a facility that will accept mom's social security and disability (which is minimal) as payment to LIVE in their facility. And even then, what will the quality of that facility be? If we want something nice, we're gonna have to pay for it. If we want to keep her at home, there is no help financially for the middle class. It's been a huge source of frustration for me, and I'm sure even more so for my dad as he has the stress and heartache of how to care for his sweetheart and keep her happy at home as long as possible. I can't tell you how many times I've laid awake at night contemplating the issue; it sounds dramatic, I know. But until you've been in this situation, it's hard to know the struggle and the heartache it brings.

I know our family is not alone. There are thousands, perhaps millions, who face this same dilemma. I have no idea how they do it. Oftentimes people have to give up the things they've worked hard for their entire lives (houses, cars, etc) in order to obtain proper care. I've met people who have had to sell all they have and move out of state just to make it work. This is tragic. Why can't more be done to help these people? Why can't the people who have worked hard to make their way in life be rewarded just the same as those who have struggled? It seems an injustice to me.

This issue has weighed heavily on my mind for quite some time now. And then it came to me: I had (what I would consider) a brilliant idea. But every brilliant idea is also a little bit crazy, right? For those who know me, you know how much I HATE to fail. Too many times, we let our fear of failure hold us back from potentially accomplishing great things. If we let that fear hold us back, we can miss out on opportunities that can not only have a huge impact on our lives, but on the lives of those around us as well. And so, after months and months of deliberation, I've decided that I am ready to move forward with my crazy, brilliant idea. And I'm going to tell you ALL about it tomorrow!!! Stay tuned!!!

Thanks, but No Thanks.

Before I was a mom, I thought I had motherhood figured out. I graduated with a degree in Early Childhood and thought I was pretty smart. I attended several trainings for my job as a preschool teacher and read many articles and books on discipline, parenting, etc in an effort to help me in my job and prepare me for my future of motherhood.

What I learned upon having children, is that no book or training prepares you for the real life situations you face in daily parenting. I found early on that the textbook logic answers don’t always work and each child behaves and reacts differently to things. A great example I can give to you is the toddler store meltdown. When my first child was only a couple years old, she began having massive tantrums in the store when she couldn’t have what she wanted. The textbook answer to tantrums: do not give in to what they want and remove them from the situation. If only that worked! As I tried to put my brilliant parenting knowledge to action, and calmly explain to my daughter that she would NOT get anything when she threw fits, her tantrum only increased. She made a big scene. I could feel my face grow hot and redden as I struggled with a writhing, kicking, screaming 2 year old who couldn’t have whatever object it was that she wanted at the time. I could feel the judgmental stares burning into me and I remember one lady shaking her head and rolling her eyes. I could’ve died!

I’ve had many a lessons such as this one, as I’m sure every mother in the universe has. There is always someone ready to criticize, judge or make suggestions on your parenting techniques. I have definitely gained some wisdom, and humility, since becoming a mother. I know not to judge too harshly with the way a child behaves and the way a parent chooses to handle their child(ren). It is such a personal thing and there isn’t always a clear answer as to what is right and what is wrong. And a child’s bad behavior is not always a result of bad parenting. Most parents are doing the best they can with the tools they have.

This same conflict exists with care giving. Like parenting, it is a tough job. There is not always a right or a wrong answer in a given situation. Most of this is trial and error; we learn as we go what works with mom and what doesn’t work. People can be very quick to give their opinions on how you should handle your loved one even though they are not there on a day-to-day basis to really understand what is going on with that person.

I’m not saying that all advice is unwelcome. There are times when it is appropriate. Sometimes we may not know the best way to handle a situation and we look to others for ideas of things that have worked for them.

In the beginning of mom’s diagnosis, many family members had their opinions on how her health should be managed. What we also found was that the people who had the most opinions were the people who were around the least. We made it very clear that if any member of the family wanted to be a part of mom’s life, criticism and sneaking behind our backs to do what they felt was the better option for mom would not be tolerated in the least. It seemed to nip the problem in the bud, for the time being.

Recently, I had one family member email me about an issue regarding mom and very quickly it became an attack on our care for mom.

“You should have done this a long time ago….I told you that you needed to…blah blah blah.”

Ironically, this person has only been over to see mom once in the past 8-12 months. She rarely calls. Only recently she has been talking to mom again on the phone (when mom calls). I would hardly say she is in any position to give advice on how to handle the situation. Nobody has the right to tell a caregiver what they are doing wrong or right. This is an extremely difficult position to be in; to have to reverse the roles and take away mom’s independence little by little and be forced to treat her a child. Many times the things we have to do are hard and it takes a little bit of emotional prepping to do it. It’s not that we don’t know what we should be doing, it’s that we need to get some courage to do it. Sometimes it is about choosing our battles and allowing mom to keep some of her freedoms for a time until it becomes necessary to take it away. I repeat again, it is a difficult position to be in.

If you are just starting your journey with dementia, take it from me: people will come out of the wood work with all kinds of advice, opinions and even judgments on the care you give your loved one. I think it’s important early on to set the record straight and let everyone know who is in charge of the caregiving decisions. Be firm and stand your ground. It is easy to be taken advantage of, to question your ability, to feel inadequate in the care you give. Seek advice when you need to, but turn to the right sources for help (you can visit my resources page for ideas). Last of all, have confidence in yourself and don’t let the naysayers bring you down. There will always be someone there to criticize the job you are doing, no matter how well you do it. Let it roll off your back and spend invest your energy where you need it most: in your caregiving.

“Let Me Know If You Need Anything!!”

I might not be too popular for writing this post. Very likely, some will be offended at what I have to say. But my intent in sharing this blog is to share the whole journey: the good, the bad and the ugly. It defeats my purpose in writing to pick and choose which pleasant or unpleasant things I will share.

When someone you love is diagnosed with a terminal illness, emotions run high. You will encounter many people-friends and family alike-who are “devastated” with the news and some will spend days crying about it. Through weepy eyes and sorrowful voices, they will tell you,

“If you need anything-anything at all-I’m here. Please don’t hesitate to call.”

The problem is, talk is cheap. If you are just starting out on your dementia journey, take it from me. There will be many well-wishers and good-intended people in your lives…in the beginning. As time goes on, you will learn who is just talking and who actually means what they say.

Sure, people get busy and people have their own lives and their own problems. Others are just full of excuses, to put it bluntly. But why cry and pity and offer to help if it isn’t sincere?

Lately I’ve been feeling very discouraged. I try to look at the bright side and see the cup half full. When my dad had the ceiling fiasco, we had friends and family who dropped everything to come over right away and help. My heart was touched and full of gratitude for those people who were there for us in our time of need. But we also had the well wishers, “if you need any help…” who couldn’t be bothered to even return phone calls to help my dad with some finishing touches (might I add that my dad is not a freeloader, he was going to pay these “friends” what they were worth to get the job done quickly so as to restore order for my confused mother).

This is just one example of many that I could share. One of our biggest struggles is caring for my mom. She is to the point that we really aren’t comfortable leaving her alone. It is impossible for me to be there with her everyday. My dad has to work; he’s not even close to retirement. When it came time to put those words into actions, there was little help to be found. My mom has one brother and his dear, sweet wife, who go over every week. I know it’s a big commitment. I know there are probably other things they would like to do with their time. I know because I’m in the same boat; I have a lot on my plate as well. But their love for my mom and my dad keeps them dedicated to coming over despite the obstacles they may face in coming.

We haven’t been this lucky with everyone. We have had some family volunteer to come over, only to “call in” most weeks that they aren’t feeling good or have other plans and can’t come in. Some have volunteered to help “in any way” but then want it done on their terms only, such as dropping mom off at their house for the day. Anyone reading this who is caring for a loved one with dementia knows that that is NOT going to work out too well. With mom’s obsessions and rigid routines, she thrives best in her own environment. There’s no way we could get her to go to someone else’s house for babysitting.

We’ve had some who have said they are available to help and then expressed their hopes to others that we hire them on as a paying caregiver. We’ve had some offer to help clean,

“You just let me know what you need done and I’ll do it.”

When I asked her if she might be able to do some dusting around the house, her response was,

“Oh, I really hate dusting. That’s my least favorite chore.”

Needless to say, that was the last time she volunteered to help with chores.

We’ve had some who have offered to come and help but then asked for gas money or to borrow dad’s car to drive mom across town to run errands. And complained at how “unfair” it is that dad would not let them borrow the car (despite the fact that he did give them gas money).

The thing that hurts the most about this is that there is no spirit of love and service. This is not family. Family is supposed to be there for each other through thick and thin with no expectations of anything in return. At least that is what my dad taught me. That is the kind of family member he has been to everyone.

In fact, that is the kind of MAN he is. Throughout my life, I have watched my dad give countless hours of service to others: friends, neighbors, family members, church members (my mom has given lots of service, particularly in church, over the years as well). He has done it all out of the goodness of his heart. He’s never given a minute of service-not even a minute!- with the expectation of gaining something for himself. He would never even think of such a thing!!

Lately I’ve really been struggling with feelings of bitterness and resentment at the lack of reciprocation my parents have received in their hour of need. In part, maybe it’s our own fault. Outside of family, it is extremely hard to ask for help. My dad won’t ever ask for help (except in the instance such as the ceiling, where he fully expects to compensate that help). But family and close friends and friends from church know of the struggles we face. They ask; I am open in sharing our struggles and challenges. I feel abandonment for my dad, if that makes sense. I am hurt for him; hurt that people can’t see the sadness and the despair and the challenges he faces and try to help lighten his load. As if it isn’t hard enough to have lost most of the woman he has known and loved nearly his entire life, he now faces the challenges of balancing all of her duties that she once tended to (cooking, cleaning, laundry, bill paying, grocery shopping, etc) WHILE working his business and WHILE caring for her. To have family offer to help and then flake out when push comes to shove only adds more hurt and more stress to the situation. I know he feels he is in way over his head…we all do!

Last Saturday morning, my husband took our boys over to my dad’s house (while dad was at work) and mowed his lawn. He didn’t tell him he was coming over, nor did he plan on telling him that he was the one who did it. He had our boys pick up the leaves and clean up the trash that the wind had blown into the yard. Later that day, my dad called me and said he knew Jeff had come over. We both feigned ignorance at his accusations, but he said this,

“I came home and noticed somebody did my lawn for me. I was feeling pretty good, thinking someone from church must love me and must have come over to mow my lawn. But then I realized that nobody would do that for me; I have no friends so it must have been Jeff.”

It hurt me to hear him say those words: “I have no friends”. After all he has done to help others in his life, it’s a shame that he feels this way. I know many who love my dad and think the world of him. But it’s true what they say: actions speak louder than words; now more than ever.

It isn’t enough to put the offer out there. If you don’t mean it, don’t say it. It hurts more in the end when people give false illusions of compassion and concern. For those of you reading this who are in my shoes, you are probably shouting your “amen” at home! You know exactly what I’m talking about. For those of you who know someone who is struggling with this disease, or any terminal/debilitating illness for that matter, I challenge you: reach out to those people! Don’t wait for an engraved invitation to help. Do not give empty offers and vain condolences for their situation. Be proactive and do something! Take a meal over, visit with the person, show up and do their yard work or clean their dishes, take them a plate of cookies…even just sending a card or a note to let them know that you are thinking about them can mean a lot!

There are many lessons I am learning in this journey of dementia. This is just another one of those lessons. I am far from perfect and I’m sure at one time or another in my life I have said the same thing,

“Let me know if you need anything.”

I think twice before I use that phrase now. I will take this as a life lesson to be a do-er, not a say-er.

Maniac Monday

My husband and I just love to get away on date nights. I'm a stay-at-home...and I love my kids and my job. I also look forward to getting out at least a couple times a month with my hubby! When we go out, we have to make sure we have a babysitter for the kids. Aubrey is 7 (she is the oldest of the younger kids). Aubrey's a pretty smart girl. She knows how to take care of her basic needs: grooming, going to the bathroom, fixing simple meals, etc. She knows her address and how to call 911. But there are other concerns I would have in leaving her home alone. If there were a fire, or other medical emergency (if she cut herself with a knife while making a meal, for example), would she know what to do in her frantic state of mind? What if a stranger came to the door and tried to intrude? What about if she decided she wanted to go out for a walk by herself...would she be able to make it home safely?

These are the very dilemmas we are facing at this point with my mom. While, for the most part, she is able to meet her basic needs, there have been some safety issues that are of concern to us in leaving her home alone. In talking with other members of my online support group, my dad and I have concluded that we do not want to wait until the moment that disaster strikes to realize that she needs full-time supervision and care. We are in the process of obtaining Social Security benefits for her; in the meantime, it would be quite costly to bring in a full-or even part-time caregiver and aren't in the position to do that at this point. Until we are able to receive some sort of benefits or caregiving grants, we have family coming in a few times a week to help supervise mom while my dad is gone at work. Hopefully this arrangement will continue to work until we are able to obtain some funding to assist us in her care.

Mondays are my day to go in and "babysit" my mom. I've been doing this for a few months now, and mom is still resistant to my being there. There is usually the preemptive measures attempted by mom the night before (when I remind her I'll be over in the morning) to prevent me from coming,

"You don't need to come over, no. I'm okay, I'm fine. I don't know why you think you need to come over every time on Monday."

Followed by my attempted pacification,

"I know you're okay, mom. I just want to come visit you and help you out. I know you don't always feel good, so I thought I could help and keep you company. It must be lonely being by yourself everyday."

Despite her resistance, I always show up on her doorstep every Monday morning. I usually let myself in with my housekey.

Last Monday, after my boys continually rang the bell while I fidgeted with my keys, mom cracked open the door, peeked her head out, and said, with obvious disappointment and annoyance in her voice,

"Oh. It's you. I was hoping you weren't coming today."

I chuckled (I know better than to let it hurt my feelings) and let myself in. As usual, the house was dark and stuffy. Mom gets very hot and sweaty while blow drying her hair. She believes that only if she keeps all the doors and windows shut, and every light off, that her house will remain cool. Often times I find her sitting in her room in the dark, on the edge of her bed, arms folded across her chest and her posture slumped over as she stares down at the ground. I admit I feel somewhat of a shut-in when I am at her house. When I arrive, the first thing I do is open up the curtains in the living room-after leaving the front door open to air the place out. She usually goes back to her bedroom to finish getting ready-getting ready for what I don't exactly know. Ready for a day of sitting at home. She doesn't want to look like a "Plain Jane", even for herself. When she makes her way back into the living room, she immediately shuts the door and complains,

"I don't like it when you leave the door open. There's yucky stuff in the air that comes inside."

Sometimes she will swat at the "yucky stuff" in the air (which I only see to be normal lint that can only be seen in the light), followed with, "See? Ewe, no, yuck!"

Sometimes she will leave the blinds open; other times she will close them and complain that it makes the house too hot. The sun hits the opposite side of the house, and I don't notice the house getting any hotter with the blinds open. I usually open everything back up when she leaves back to the office to play games on the computer, only to repeat the process once again when she comes back out.

One of my Monday duties is to clean out the fridge. This has become a sore spot with my mom. She gets angry with me for throwing out rotted food.

"I don't like it when you come over and throw my good things away, it makes me mad when you do that!"

On a couple of occassions, she has dug the rotted food out of the trashcan, insistent that she is making it for dinner. I had to call my dad to forewarn him about the situation and let him deal with it when he got home. I feel bad to push it off on my dad; it's difficult for me to be in a confrontational situation with my mom. On one hand, I can empathize with how she must be feeling. It's hard to accept this role reversal, with me acting as her mother. And in her mind she is perfectly fine; she doesn't need me to come in, invade her space and throw away her things, even if it is rotted food. On the other hand, I simply cannot allow her to eat rotted food and risk her and my dad getting sick. I've learned to try and clean out the fridge while she is away playing her games or fixing her hair. But when she catches me, it isn't pretty.

Many times, we will run errands to the bank or grocery store on my Monday. Lately, I've been trying to get her to do more than play computer games all day. A couple weeks ago, I brought over one of her favorite games from the past. When I told her the game by name, she had no idea what I was talking about. When I coaxed her to come and sit down and see what I was talking about, she remembered how to play the game. In fact, with only one minor reminder of one of the game's rules, she was a great player. I only beat her by one turn.

By naptime, she is practically pushing me out the door. She wants to be alone in an abolutely quiet house. My youngest son is usually in the other room napping, and my 4 year old quietly watches a movie. I firmly, but gently, tell her that I will be sticking around for a while longer and use that time to clean up around the house and organize some of the chaos. We could literally not say a word the entire time she's napping, but she would still complain that it's not quiet enough. Eventually, she's going to have to adjust to having someone around 24/7. May as well help her adjust to that now.

By the time I get home, I feel a little overwhelmed as I look around my own home and see the mess that I didn't have time to clean before I left the house: the breakfast mess that is both on the floor as well as the table and in the sink, the toys that have been scattered about, shoes that were pulled out of the closet in a rushed effort to find each child their shoes, laundry piled up waiting to be thrown into the washer. I feel physically and emotionally drained. Not necessarily because my mom has worn me out. It's hard to put to words; the situation is just draining. It is very despairing to watch someone you love slowly slip away. Yet, as maniac as my Mondays are, I am grateful to be able to help and give back for all the many things my parents have done for me over the years. I would hope that if I found myself in this same situation someday, that my children would be there for me. I know that my mom is oblivious to what we are doing for her now, but I believe that someday, in the hereafter, she will know everything we've done for her. Someday, she will be whole again; she will be able to look back and see, through my actions, just how much I love her. That is my hope.

Bringing In The Help

There comes a point, in every dementia patient, that constant care becomes an issue. They can function for years on their own (depending on the form and progression of their disease), but at some point it becomes necessary to bring in outside help.

My dad and I had a deep conversation (about a week ago) discussing life, our situation with my mom and the future. We talked about some tough issues, not all of which I will share. One topic happened to be about bringing in outside help. My mom seems to be doing okay functioning on her own throughout the day; but then again, nobody is really there all day to supervise her and see exactly what goes on. We know that she takes her medicine, naps and plays games on the computer. Occassionally she will do dishes or a load of laundry. What else does she do with her day?

There have been a couple of issues that have been concerning us as well. For instance, she had one of her medications switched; she does not feel like it is working to help her headaches, so she started taking some over-the-counter medicine as well. Not a big deal...except that one day we found her taking more medication before she was supposed to, because "it's not working". Obviously that could become an issue with overdosing.

We've noticed more and more that she is subsituting meals with Ensure. I suppose it's good that she's getting something in her system (I know this can be a struggle for many people, and Ensure is one solution for the problem). However, she complains of an upset stomach frequently, which I believe could be due to medications and a liquid diet. We have been trying to make sure that she is eating at least 2 solid meals (lunch and dinner) and leaving the Slim Fast or Ensure for breakfast.

A couple weeks ago we were over at their house for family dinner. I had plugged in the rice cooker and was filling up the rice cooker pot with water. My mom came along and put her hand inside the outer shell of the cooker (which was hot). She freaked out and ran to the sink, rinsing her hand under cold water; I'm not sure what would posess her to put her hand inside the cooker. Later that night, she was washing some food down the garbage disposal and something slipped down the drain into the disposal. She put her hand in the sink as if she was going to put it down the drain to retrieve whatever had fallen. I quickly yelled at her to turn off the garbage disposal, which she did. Luckily, everything was okay.

These may be small, isolated incidences, but it seems like mom is becoming more careless and clumsy. While she may not be putting herself in direct danger right now, we want to make sure that it does not escalate to that point before we realize there's a problem.

After discussing matters with my dad, we decided it would be a good idea to get some people over there during the day. There are few intentions with this:

1. Keep her company so she is not sitting in front of the computer all day long.
2. Observe her and make sure that she is safe and eating properly.
3. Help clean up around the house-it has been an overwhelming task for my dad to keep up on the housework, and mom is unable to perform her tasks that she once engaged in so faithfully. (If you missed my post about housecleaning, you can read about it by clicking here).

This is the hard part, getting people over there. I have spent the past couple weeks going over (a couple times per week) to visit and help clean. Mom does not comprehend the reasoning behind my coming over, so I just tell her I am there to help her clean and to visit with her. Each time I go, mom asks,

"Why do you feel like you always have to come over here to help me when you have your own house to take care of?"

By 1:00, she is practically kicking me out the door, because "it's time for my nap and your kids are too noisy." (On a side note...my one year old is generally asleep in the back room and I put a movie on for my 4 year old during this time, so it's really not too noisy). Nevertheless, I insist that it will be fine for her to take a nap, assure her that she does not have to entertain me, and that I will continue cleaning up until I need to leave to get my other kids from school. She is a little resistant, and I was a little unsure if I should stick around. After talking with dad, however, we concluded that she is going to have to get used to having people around and to continue to stay there for our allotted time to help, despite her resistance.

In my observations, I have noticed a couple of things that need to be addressed for anyone who is there caring for her during the day. One is mealtime. When she makes herself a meal (especially if it is left overs from the fridge), the food needs to be inspected to assure that it is okay. She has attempted to eat rotting food and is unable to tell when things have gone bad; my dad and I are trying our best to keep up on cleaning the contents of the fridge weekly.

Something else to watch her on is the mail. She likes to check the mail everyday and occassionally open things and misplaces them. I think she's finally beginning to understand that she is supposed to leave the mail on the couch for my dad, but if her name is on it, she will open it. She doesn't understand most of what she is reading. Yesterday she got junk mail from a jeweler. She had a look of puzzlement on her face as she questioningly repeated,

"So-n-so Jewelry?" (I forgot the name of the Jeweler) "Huh? I don't know what so-n-so Jewelry is...why are they sending me this??"

I told her it was junk, she could toss it. She replied with,

"No, I have to leave it here for your dad." Good girl ;)

For now, I have committed to going over 1-2 times a week. My job is organizing, decluttering and of course monitoring and visiting. I have an Aunt who volunteered to go over on Thursdays. I let her know our monitoring issues and asked that she can just help keep up on some surface cleaning (dusting, bathrooms, etc). My mom still likes to load her own dishwasher, so we leave that job for her ;) I have another Aunt and Uncle, who are on vacation for a few weeks, who have said they would try to come over once a week to do the same. That gives us help 3-4 times a week for now, which I think is sufficient at this point.

Taking care of someone with dementia can be daunting, at times. I know it will only continue to become more difficult. I just hope and pray that we will have the support of our family when the time comes that she will need true, 24 hour, round-the-clock care.