11-15-10 Time to finish this blog post! I have been at this one since August! Have I come to a conclusion, no…do I have a plan set up for replacing all the time and activities of caring for mom when she was here, no….has these past months been therapeutic in anyway, no. So, the purpose of this post? Apparently it has none, or maybe this is just the result of all the thoughts, and non-moments and ideas that take place when a caregiver no longer is? I just don’t want to stuggle with this blog anymore to make it be the perfect blog, to have all the answers to what now. So, if you will all forgive this very un-proper blog… I will conclude and post it today!
Oh yes, today is Monday, 9:07…Mom passed on Monday, August 16 at approximately 9:15….13 weeks ago, don’t like Mondays……
Sunday at Home…..9-12-10
Isolation and loneliness just don’t seem to get eradicated; they even intensify in some instances, once your caree is gone. There is even a greater sense of being abandoned. I talked about on my radio show how I didn’t belong anywhere as a caregiver before I got involved with caregiving.com. Now that I am no longer a caregiver that sense of not belonging is again plaguing me. If I am not able to leave the house and go somewhere, which is most days, then I am alone, all day and often in the evenings. Alone in mom’s house with memories of mom all around. Tomorrow it will be 4 weeks since mom passed. How fast these weeks have gone but yet it seems like she just left today. I am having to find my own way through this process of grief and sorrow, loneliness and loss. The hospice people basically left me high and dry, no support for me once mom was gone. The people of my church are awesome but they live an hour or more from me. My family is still the same, uninvolved. So, I have to figure out each day, each moment sometimes, what will I do, how do I get through, and somehow I do…but only with His grace for sure. Miss you mom….
August - Since mom passed I have: Gone to Barnes and Noble with Gary, got a Starbucks while there…went to DQ…went to the zoo, had lunch, and went to the light house with friends…took a long drive in the country…gone out for a late night eat with Gary and friends…go to lunch with a new friend… walked to see my son and grandsons…gone to church on Sundays and Wed, both of us…we went to a special banquet dinner for our Pastor as well. So, I have done quite a bit, both new and resurrecting of old favorites during these last 2 weeks.
However there are still many days and hours that I am home by myself, some of that time is difficult to get through. I have started getting Netflix again so if I need to, I will pop in a movie to take my mind off being here alone without mom, and pass a couple hours. I am ever searching for info on what one does after caregiving. Had the thought today, where are the others? Where are those who are looking to rebuild their lives after their loved one has passed on?
I have this website now, to help me as I move forward and I want to help others too, but where are they, how do I find them, how do they find me?
I feel excluded from the “club”. My membership has expired. Ok that may not be a suitable term, but it is what came to mind. It is a struggle to keep writing, to even put together my radio show, but I have to keep pressing forward because I have a goal and a purpose. First is to heal from the hurt and absence of mom, second to help others to heal. Many ex-caregivers to not have a purpose or any direction, I am blessed that I do. Yet there is still a void, still an emptiness that I feel each day. I am growing stronger, less emotional, but I need to do more “Replacement Therapy” and so I took a look at the responses I was given on caregiving.com. They are suggestions as to what to do to replace those mom caregiving moments of my day. I had been thinking about the schedule thing that Denise mentions, need to take a harder look at doing that.
Last Tuesday I was in a Powerful Tools for Caregivers class. I was the only one in a roomful of caregivers who did not have their person anymore. I had a rough time emotionally that night, and I decided it would be better for me to not continue with the class. Maybe the next time they schedule this series I will be able to participate. It is a 6 weeks long class, and I had trouble the first night, so, no I don’t think I can do it.
8-16-10
First week……go to Barnes and Noble, get a starbucks, get a DQ…with husband
Called a dear friend from church and asked if I could hang out with her and her kids tomorrow, she said yes when and where and we formulated a plan
8-17-10 we grabbed subs and went to the zoo, had a great time, then went out to the lighthouse for awhile. A very nice afternoon spent, about 3 the nagging thoughts of, I have to get back soon, fix the pudding, fix the pills…..wait no I don’t…oh yes, mom is gone….and the sinking feeling begins, what will I do when I get home, anxiety starts battling with me. I get in the house and it hits me, sorrow and sadness, I want my mom. Don’t know how long this will take, don’t know if I can replace enough to make it go away.
~~~~~~stand in mom’s room crying I miss you mom~~~~~
8-17-10 Went to late dinner at Applebys with Gary. Waves of grief continue to pound me, memories envelope me trying to choke the life out of me. What to do tomorrow while he is gone and I am here along….will work on Thursdays radio show, print memorial cards, getting ready for the mailings to start….but what else, what else that is meaningful, distracting from the memories and emotions..what will fill those voids
8-18 walked to Aarons and visited with him and the boys
Evening, Panera and Dq shopping at Kohls
Being home, anxiety and despair are knocking at my door repeatedly. Have to fill every moment with something, and that gets exhausting.
Going to get ready to go walking soon
Go out with Susie next week
Call Linda to go out on her day off
A.M. get up and check on mom
Dishes, clean up kitchen
Prepare mom’s pudding, and a.m. meds
Before aide was coming everyday, change and clean mom, change her gown, bed pad
Reposition her, cushion and pad all the places that need it
change bedding when needed
Sit up her bed, put in a video
Feed her her pudding
Midday, not eating anymore at that time
Change her, turn her on her left side
Cushion and pad
Make sure fan is blowing just enough to maintain a good temp and air flow
Checking regularly to see she is covered
These last days checking all the time, is she still breathing, is she awake and watching her video, how do her eyes look , her mouth to dry? Does she look alert or blurry
Supper time, same routine basically as breakfast, fix her pudding, dissolve her polls and mix them in
Change her, sit her up, cushion and support her, put in video
Feed her
Eating stopped on Aug 6 2010, it is now the 15 she ate only tiny bits a few times during that week then just refused anymore (cover that more in detail later on)
Checking on her is frequent
Checking her eyes, her breathing, her lips, areas of pressure that are giving me some trouble
An aide comes 7 days now, nurse too signs of the end being near
The aide hooked up her oxygen to give her some air assist as her breathing is shorter and more labored today
These are most of what each day consists of especially for this past week.
The schedule I have been on these past years has changed only as the stages of dementia change mom and I would have to adapt.
I am obviously doing less now,….no pudding to fix, cranberry juice to thicken, pills to dissolve. Most of her personal care is being done by the aides, but that is in the morning, I have the rest of the hours.
How do I replace these things now
And what will I replace all off of it with when she goes home
Posted on Caregiving.com
Ok, I need everyone’s help here. I am writing a piece called Replacement Therapy. I am looking for ideas of what to do to replace all the things I have done for mom these past years, fill those time slots with instructive, creative, supportive alternatives. Remember, there are emotional connections worked in there, habits of doing specific things at specific times. Restrictions of freedom that have to be broken through.
So, anyhow, shoot me some ideas. These are things I like/love to do…ok just got stuck on that, give me a minute…obviously I love to write about caregiving, and will continue to do so, I love my new BlogTalkRadio show (The Bear Hug Waltz) and will continue with that, I have signed up for a month of classes on Powerful Tools for caregivers, did that a month or so ago. So, apart from those things, travel, visiting the sons and grands, photography, movies, reading the Word, my Nook, and other books, creating things with my Printmaster, making candles, making jewelry, cooking/baking, walking, making floral arrangements, rearranging rooms and accessories, singing in the choir (solos), watching cooking, and travel shows on TV, I used to do lots of types of crafts years ago, but stopped a long time ago, not a real interest anymore. Oh and I use to do tons of gardening too.
So there you have it, can’t thinks of anything else really, oh a couple loves, I love pens and purses lol I try to restrain myself though, with my husbands help lol. So, can anyone make sense of all this. Oh yes, I do like to listen to all kinds of music, but it has pretty much been squelched while living here.
So, the person I was when I moved in here meta-morphed into a caregiver—stranger then life lol. I need to find parts of the old me and combine them with the newly meta-morphed me! Any ideas? It’s all about replacing all these caregiving moments with me moments.
Your blog really touched me as I lost my 24-year old son on April 10, 2008. He was totally dependent on me for his caregiving (quadriplegic from Spinal Muscular Atrophy and advanced scoliosis). After devoting every moment of my life to him, I was lost when he was gone. Even though I have a husband and two other adult children, every decision in my life was tempered by the effect it would have on my son. Our meals were prepared around his needs, as well as errands were planned around those who could assist me.
Since his passing, I have had a few articles published (usually on the subject of my son) and I have published a cookbook focused on the foods he could eat (“I Can Eat That!”). Like you, I am still floundering after all this time as to how to fill the gap in my day and the huge hole in my heart. God is the buoy keeping me afloat during this interim time.
Hi Donna–I’m not sure how well my suggestion will work (this is a new idea so I’ve not tried it out), but what about this:
1. Write down the schedule (time and task) of caregiving responsibilities for your mom.
2. Once you have your list (because you love lists, you may this already), write down one thing you enjoy about each task with your mom.
3. Then, use this list of enjoyments to begin to recreate your day: Replace the caregiving activity with an activity that creates a similar experience or emotion or enjoyment for you. Perhaps during the time when feeding your mom took place, you now bake or write down your mom’s favorite recipes. And, perhaps when you provided personal care, you now use that time to create with your hands.
4. I would also say that, for now, build in some quiet time. During the quiet time, contemplate: How will you use free time, when you have it? How will you bring your caregiving knowledge to the community? Who will you be when you go out as a “Godspeed Caregiver”? What would your mom wish for you during this next stage of life?
5. Finally, this transitioning will be bumpy. Feel the bumps, take time to readjust. The bumps can be a great guide.
Hope this helps!
Sharon says:
I sometimes think about this too. How will I transition from something so intense as caregiving to being all alone? I think Denise has some good ideas. I would not be in a hurry to conquer the world. Take time to grieve, and then slowly add things meaningful to you to your schedule and life. You do not need to be in a big rush to do this. It sounds like you have a ton of interests and passions. Test the waters slowly, and see where God leads you.
I agree…give yourself some down time….some rest….the answers will come….
I truly believe God closes one door and eventually opens another. Dont overthink….things will come to you. You even mentioned that on your blog show….you never in your wildest dreams would have thought when you started writing how far you would come….tomorrow isnt more important than today…take it one day at a time…..one step at a time.
We are all here to keep you company when you need it as well:)
I will talk to you soon my friend:)
Bette says:
Hi Donna,
I am sorry for all the transitions that lie ahead. Caregiving affects all of our phases of life.
It sounds like you have many areas that capture your interest. Thankfully you remember each of them!
I agree, it will take time, but thinking about it and trying to decipher it all is a very big step in the right direction.
G-J says:
Donna,
Transitioning will be interesting. I think you have a good start with all those things that interest you. I don’t know if I could list that many! I’m impressed. I’d say to write down any appealing idea that comes to you so you don’t forget it. In the future you can look at that list and research those that appeal to you at the time.
Francine says:
Wow! Sounds like you’ve got all kinds of interest!! You should have lots to keep you busy! But I’m sort of along Denise’s lines. I’d make a wish list of things you’d like to do. And then plan when you want to do those things on your list. I do that now! You like to cook and bake. Well, try something you’ve never made! How about bread? I’d like to learn that myself! You can get lost on the internet researching all types of how to’s and recipes. Or make a meal from another country once a month. That too can keep you busy researching! Get a tape of music from that country from the library to play while you’re cooking and dining! Pamper yourself. Get some lovely bath salts, or give yourself a pedicure, or better yet, go out for one! You can have almost as much fun making out a list of things to do, and looking at it, and planning for it, than really doing it! You said you have grandkids? I had a pajama brunch for New Years Day. It was a bit of planning and making things for it, but it really paid off in the end, my grandkids had a blast coming over in their jammies, and so did their parents! I also had a Halloween party for them. I love to make and decorate sugar cookies, so I made plenty of those! It gave me something to do our of the norm! I got lost in my activities! Or how about a tea party for some of your friends? You could plan a event for every month, or every other month! But also plan on getting out and being among people! And you mentioned having a husband….well don’t forget about him. You can plan dates and cozy times together! A movie night, even if it’s at home, or even dinner by candlelight can make a plain dinner special! Good luck to you – sounds like you’re already on your way with all the interests you have!
