3 Months In
I realize not everyone is going to care about what I’ve been going through as a caregiver. But with the crazy statistic that 65.7 million Americans care for a family member with a terminal illness, I thought I’d continue to share my journey with Pete with you.
It seems as though Pete’s reached the late-intermediate stage of Alzheimer’s, there is no set time table with the disease just a person-by-person pace. He easily fixates on things for long periods of time, particularly anything of extreme size or quantity. Think car dealerships, skyscrapers, etc. A big source of anxiety is the idea of something he needs running out, so several of everything are kept on hand at all times. Soap, paper towels, and the like. Date and time are both obsessions, as are fidgeting with his watch which he changes the settings on several times a day.
Pete still gets great joy out of reading the daily newspaper cover to cover (sometimes several times in the same day) and walking outside, so we take full advantage of both. I try to stick to his daily routines as much as possible because he’s easily thrown off, something as simple as the Girl Scouts coming around to sell cookies will leave him asking a million questions hours after the event.
As we’ve moved deeper into the disease more symptoms are revealing themselves. Pete’s begun to forget everyday words and will replace them in conversation with one of the completely wrong meaning. At times no words at all want to form and what comes out sounds more like a child learning to speak. Jibber jabber. His balance is beginning to fail him as well, and a few weeks ago he took a tumble while showering (luckily he was uninjured). Walking has slowed down and it takes a few tries to get up from a sitting position, both make his habit of wandering around more dangerous and me more hawk-like. But he still eats like a champ! More like a teenage boy actually, the other day he housed six slices of pizza for dinner.
A recent development is what I like to call the True/False Game, where he has a thought so set in him mind that he believes it no matter what. Like one of the indoor cats getting outside last week, even though they were both napping under a bed. Another high point of his days is Piper, I bring her with me Monday through Friday and he can’t get enough. Things about her are actually some of the only new information he remembers, so I’m grateful for any sort of joy she brings into his life. And they have such an amazing bond that it has me wondering whether she might make a good therapy dog to bring happiness to others.
One thing I never stopped to think about when I became Pete’s daytime caregiver is what sort of effect it might have on me. As with all terminal illnesses, which Alzheimer’s ultimately is, there are good days and bad. And you take both in stride not knowing when the switch is going to flip the other way. In the past few weeks it’s been in the ‘bad’ direction more than the ‘good,’ and I feel ragged. My anxiety, which has always been on the high end of the spectrum, has skyrocketed. My will to do anything after going home has plummeted, and I don’t discount the fact that I might be slightly depressed. My solace lies in the fact that I’m most likely suffering more than Pete, simply because he doesn’t remember most things short term any longer. And I wouldn’t change that for anything.Posted In my life
JessicaApril 11, 2012 at 9:13 am
I didn’t even know you were going through this. My aunt took care of my grandparents in their decline and it was unbelievably difficult. Be sure to take care fo yourself, and know when you need help or a break.
adeleApril 11, 2012 at 9:16 am
You cannot underestimate how draining this is Kelly, so make sure you also have “you” time.
Happy Wednesday hun xoxo
AnniApril 11, 2012 at 9:17 am
Kelly, my day job is a caregiver in a nursing home. It’s kind of a unique situation, though, because my mother-in-law started the home, and it’s a very family atmosphere, down to some of the residents living in her own home. Many of our residents have dementia or Alzheimer’s, and I’ve cared for people who are so far gone they’re almost vegetative, and people who are still very functional and downright awesome. Either way, it takes a lot of emotional energy, and I really commend you for doing it. Never underestimate how tough the job can be, and don’t feel like you have to do it all. If you need a break, find a relief system and a way to take it. It also helps to have people to talk to, because there are a unique set of challenges and frustrations that come with care, and not everyone will understand that.
Rebekah MielApril 11, 2012 at 9:31 am
Hi Kelly –
I wanted to write a comment on your earlier post, but it slipped past me. We met briefly at AltSummit + have been in contact on Twitter. I have experienced a similar situation of a different sort. A few years ago, my husband, who was then 30, was diagnosed with stage 4 lymphoma. We spent almost two years in and out of the hospital + I was his full-time caretaker while trying to work 40 hours a week + keep our life together.
It wasn’t easy, but I learned so much about myself and what I truly value, that I wouldn’t really trade it for anything at this point, which probably sounds strange. I learned to be a lot more gentle with myself + be lavish with even the smallest things (yes, I’l have cake for dinner) and while that can’t go on forever, it makes the now a little bit better.
Some days were really horrible + I was so angry and mean to everyone and was not a person I liked, but that’s just the way it goes.
I don’t want to sound to preachy or give advice because that drove me a little crazy, but if you have any “how am I going to get through another day of this?” type questions, feel free to e-mail me. I also included a link to our blog from that time above as well.
The way in which our situation differs, though is that despite all of the doctors with their shaking heads, my husband’s disease did not end up being terminal, which I know is not possible with Alzheimer’s (my grandma has the early stages of it).
SophieApril 11, 2012 at 9:38 am
What an amazing job you have undertaken. Having had several members of my family suffer with Alzheimers all I can say is despite the circumstances, keep on laughing!
Keeping a sense of humour, even in the darkest moments really gets you through and can lighten the load, so to speak. Find people to share the stories with and help when times get tough.
x x x
roothApril 11, 2012 at 9:39 am
Kelly, thanks for keeping us posted on Pete and around your role as a caregiver. I can imagine how difficult it is on an emotional level and how draining it must be. The fact that you are able to push through and produce the work you do on this blog is an inspiration in itself and I would like to shake your hand, my dear madam 🙂
AnnieApril 11, 2012 at 9:44 am
Kelly, you are doing an amazing thing. I haven’t gone through anything alike so all I can say is that you need to take care of you. Make time to do things for you.
I can’t imagine how hard it must be.
You are truly amazing.
KarenApril 11, 2012 at 9:50 am
we do care, Kelly. Please do tell us.
Ms. PantsApril 11, 2012 at 9:56 am
Wow. I’d like to give you a hug right now, and maybe have a little exhausted cry with you. I know where your head is right now. I helped my mother care for my grandfather while he was going through Alzheimer’s. It was excrutiating at times. He was the most respected doctor in his town and when we came to bring him back to Texas with us so that we could better care for him, it seemed like the whole town stopped by to share stories of how wonderful he was. (Exhausting, heart-warming, and heartbreaking at the same time.)
Know this: It *is* harder on you than it is on him. The solace in that is that he’s not really in pain and while he may get frustrated with the loss of words, it’s almost like he’s going on a slow, lingering vacation in his head. With my grandfather, it was almost like going back in time–by the end, he seemed somewhat like a toddler. Flashes of mischief, naps, a love of all things sugary.
The only advice I can offer is to definitely take time to decompress now and again. Allow yourself all the emotions that come–there will be many.
Two pieces of advice, I suppose: his long-term memories should still be pretty rooted if he’s not in a 24 hour care facility. Take advantage of that. Ask him questions about his past–record it somehow. Writing, tape recorder, video–whatever. Ask him about his life before you came along. Ask about his marriage, how much he loved his wife and his favourite memories of her. (My grandfather would *beam* when he talked about my grandmother–I’m tearing up right now.) Get as much of his history as you can–it will help you to remind him of things later, and to remind you much later of …well, everything. I wish I’d done more of that.
Be well and please keep updating. xxx
Cookie and KateApril 11, 2012 at 10:09 am
So much respect for what you’re doing for Pete, Kelly. So much. You’re a kind and caring person. Hang in there.
AddieApril 11, 2012 at 10:14 am
Kelly, thank you for sharing your journey, its such a brave thing to do… and thank you for doing what you are doing – even on the bad days… big hugs
Uncle BeefyApril 11, 2012 at 11:03 am
Miss Kelly, you know how much I connect to this post. Although, you are much, much deeper into this than I am. We’re still in the early stages, but the fatigue sets in quickly with all the emotions involved. So, I can only imagine how you must be feeling at this time. Only. Imagine.
But, with these lovely comments here it’s clear that you’re not alone and have support out here.
Remember to take care of yourself, too.
EApril 11, 2012 at 12:31 pm
Hopefully if and when you need it, you can take a break from caregiving. Both my parents, who care for my grandfather with Alzheimer’s, just took a vacation to Hawaii and it helped so much with the physical and emotional toll of their responsibilities.
Molly@TheNestingGameApril 11, 2012 at 12:42 pm
Thank you for sharing this with us, Kelly. Wishing you and Pete the best.
nuhaApril 11, 2012 at 12:49 pm
my father passed away due to alzheimers when i was very young. I was 11 when he passed away and spent the previous 2 years visiting him in hospitals and trying to remind him who I was. It was a tough task as a 9 year old, but I think it was tougher on my mom. They were both pretty young when he passed away. My dad was only in his 50’s. This post reminds me of the emotional rollercoaster that was and sometimes still is our lives. What you’re doing is an incredibly wonderful and self-less thing. My best advice to you is to take a break when you need it. I am positive you deserve it.
Danielle (elleinadspir)April 11, 2012 at 2:21 pm
You are doing a wonderful thing being there with him. Have you tried playing music for him? We played old music for my grandfather some and he loved it.
KarinApril 11, 2012 at 2:39 pm
tough stuff to be sure, have you considered a group online or in real life that is for caregivers?
thank you for sharing all of this with us. i wish for you solace and strength.
The Hobby LobbyistApril 11, 2012 at 5:00 pm
Thank you so much for sharing your experiences.
noleApril 11, 2012 at 5:42 pm
You’re doing such an amazing thing Kelly – my grandmother suffered from Alzheimer’s before passing two years ago and it was so difficult during her last few months, even from a distance. I was the primary caregiver for a member of my family for several months last year. Even though the person I was caring for didn’t have Alzheimer’s or any physically debilitating symptoms, it was incredibly draining and I’m pretty sure I also experienced minor depression during those few months. Hang in there. And do try to get together with friends when you can, even if you have to force yourself to make plans and get out of the house. It really helped me to be with other people last year, even if just for a quick dinner or movie.
gorillabunsApril 11, 2012 at 11:11 pm
We helped take care of my husband’s Grandmother. I give you all the alms and respect in the world.
StephanieApril 11, 2012 at 11:30 pm
Thank you for sharing this. I’ve been studying Alzheimer’s in school recently, and I always appreciate getting the patient and caregiver perspective. It’s quite humbling to hear these stories after spending so much time thinking about the science. Take care!
Melissa AnneApril 12, 2012 at 12:56 am
Thank you for this post. A few years ago my aunt passed away from terminal liver cancer. Coming from such a small family, we immediately moved her into my mom’s home to be more comfortable. I drove home almost every weekend from college to support her and my family, I would sit by her bed, share a book and some tea. As sad as it was when she passed, and still today I am glad she is at peace. Not in pain and not suffering. I am glad I spent the time I had with her and and it was a very moving/learning experience for a young woman to go through.
AshleyApril 12, 2012 at 7:05 am
Sending all the figurative pizza in the world to Pete, Piper, & yourself! Maybe a cocktail for you as well.
You’re doing great!
Amy@OldSweetSongApril 12, 2012 at 1:19 pm
You are braver and stronger than you know. I’m sending plenty of good vibes your way. You are doing an amazing job.
Beautiful writing. Thanks for sharing.
Caroline @ Pink BasilApril 12, 2012 at 5:21 pm
Thank you so much for your honesty and bravery in posting! I have been struggling with a similar situation, and it is comforting to feel that I’m not alone. Stay strong – sending out a big hug to you and your family
angelaApril 12, 2012 at 5:38 pm
I admire the personal sacrifices you are making to care for your family. I understand personally the intense sadness that a disease like Alzheimers can cause. The best thing that you can do for yourself is to do everything you can for your own health, the more you give in to food or non-activity will progress the sadness, it won’t make you feel any better. Good luck and my best wishes are with you.
SimouneApril 13, 2012 at 8:29 am
Bless you! You are doing an extremely brave and selfless thing. Please try to take care of yourself mentally – meditation, taking walks by yourself, etc. I am certain that even though it may not feel like you are making a difference in Pete’s life, you are. All the best.
JeanetteApril 13, 2012 at 10:51 am
Thank you for sharing, Kelly. It’s clear you have a blog community that loves and cares about you. I hope some are able to take you out for a drink on a regular basis! (I would if I were not in Chicago). 🙂
Caitlin T.April 14, 2012 at 10:28 pm
Thank you so much for sharing your experience. My dad has early onset Alzheimer’s, and reading this means a lot to me.
Meli (Blush + Jelly)April 15, 2012 at 5:15 pm
My husband’s grandmother has the same illness and it breaks my heart when she does not remember her children or grandchildren. You are doing such an amazing thing by being there for him and taking care of him. Remember to always stay positive. Sending positive vibes your way.
BelindaApril 16, 2012 at 5:52 am
Of course we care, Kelly. And we want to hear your story. Well, I do anyway.
It seems that some people can relate to your story more than others can. I can’t relate to it exactly, but I know what it’s like to feel overwhelmed and anxious and somewhat helpless with a situation in life.
I can also offer a bit of a different perspective – for a few years I’ve been on the other side. I mean, I’ve been very sick and needed to be cared for. My partner has shouldered a huge burden in looking after me and he hardly gets time for himself. I can see that it has really worn him down, but most of all I can see that he feels so helpless not being able to make me better. He has had to watch me struggle and feel a great deal of physical and emotional pain, and I’m only 32 with very little chance of recovery. But still he is by my side.
I can tell you, being on the other side, that there is no greater act of love that I know of than looking after someone who cannot give anywhere near as much as they take. And I bet you are making Pete’s life a good one.
Please, as much as you can, try to take time for yourself. I know it can seem impossible but like a few others have said, even 10 minutes is better than nothing. And remember that sadly (or maybe not so sadly) that it’s not forever.
You’re a good person, Kelly. It’s people like you who show us all how much goodness there is in this world.
meganApril 18, 2012 at 9:41 am
Thank you for sharing your insight… the good and the ugly! My grandmother was just diagnosed with the same thing and it’s hard to know how much you will have to walk through with her and with my mom as she takes care of my grandma.
My prayers are with you and I look forward to your advice as you walk this out. I agree with so many of the comments above… make sure you take time for you! Take time to enjoy the things you love to do to remind you of the beautiful things in life. I know there are beautiful moments in this but there are also really hard ones as well.
You can do this! You are so brave.
TRISHApril 18, 2012 at 6:30 pm
i wish you all the best in your journey with pete. i think you are tremendously courageous and loving.
hattieApril 24, 2012 at 12:05 pm
I commend you for your work, I myself was a caregiver to my grandmother who passed last summer after suffering through very rapid decline at the hands of Alzheimers. It was both a blessing and a curse to get to spend that time with her, seeing to her daily needs and attending to her as I could all while seeing her drift further and further away. I will never take for granted anyone who is able to make a career out of caring for others. During her care, I was informed about a program designed to help those effected by dementia and Alzheimers through use of music, you can check out their website here: http://www.musicandmemory.org/ they offer a lot of great resources and if Pete was ever a fan of using music, it would be a great way to assist both of you in calming the seas during those tumultuous times. Good luck and remember, if you ever need a shoulder, there are plenty of us out here willing to listen.
EmilyApril 26, 2012 at 5:30 pm
It warmed my heart to see that photo of Piper sitting beside Pete. I didn’t have to read any further to put together the basics of the post, and I could have written a paragraph similar to yours about the dog who gave me (and at another time, my mom) one worthwhile reason to go on during a devastating bout of depression. My other dog was a companion to her previous owner’s elderly mother until she passed away and Dixie was passed on to us. Her response when my aging and fragile grandmother visits is remarkable—she’s always loving and patient, but it’s the only time she becomes even the slightest bit dominant, as though she puts on her companion/therapy dog collar and gets to work. She’ll lead my grandmother to a chair and sit beside her, like a furry butler.
I’m so moved by your commitment to Pete and I hope you have some time to let Piper bring you a little extra happiness when you need a break.
Marvelous AMay 2, 2012 at 2:33 am
Thought of you today when I saw an article on NPR (http://www.npr.org/2012/05/01/151472617/discovering-the-true-cost-of-at-home-caregiving) Hope all is well. You’re sounding cheerful lately and still finding the coolest stuff in the design world. Keep it up, and keep us updated on your experience. Know that strangers on the Internet care about you. 🙂
jessMay 7, 2012 at 10:15 am
Thanks for sharing your experience. We’re going through something similar with a family member. Reading your post was a good reminder that we’re not alone in what we’re going through. Take care.