Hello to you all from all of us here. Are you ready for as Paul Harvey would say “the rest of the story”. It all started at the end of December with our caregiver getting sick and then we weren’t feeling well ourselves. So we stayed way until we felt better and things seemed to have leveled out. But that is not what happened. My mom then didn’t seem to be herself and a week or so later I ended up needing to go and see her. So an ambulance ride later and trip to the ER we found out she contacted covid, dehydrated, not quite malnourished, but was close. I had all these thoughts going thru my head after finding this out and I wasn’t thinking covid either. So then she was omitted to the hospital. So then phone calls from doctors every day that she was in the hospital which was great by the way. They also were working on getting her rehab to help build up her strength. We had two options for placement a place that was over 2 hours away or another place around an hour away that would except covid patients. We ended up with the closer of the two. Now fast forward a few months I will give a few hi lites of the past few months… kept asking when she was going home this lasted awhile since she was in quarantine for a few more days after she got there, MAJOR sundowning happened, crying, trying to leave the floor, etc. You get the picture it was pleasant at first and I was having a very hard time with it myself. But now she is content, has forgotten that she forgets(yep a new stage) great for her, but I know things are changing, she is eating, getting her meds, being cared for and has others she can talk to as well. It’s not ideal, but it’s working.
So that is about mom now what I have been doing to make sure she will be cared for that is a whole other animal. There is soooo much behind the scenes things you have to do since we weren’t expecting to do this as soon as we needed to. So insurance would only cover so much of her care and once she hit where they felt she could go so did the insurance coverage it went as well. She was no longer covered by her insurance for care. Yep it sucked and I was left figuring it all out. So filing for Medicaid was put in the works and I will tell you now get an Elder Lawyer he has saved me so much heartache and knows all the current this’s and that’s. So additional put her on lists for closer facility near me, but have been told it could be eight months to a year to get her moved. Well onto selling property, car and filing more paperwork. I can tell you doing all this would be easier if all I had to do was this, but I have a family and two active kids involved in a lot of activities and well it is coming to the end of the school year and let’s just say I could use a well deserved vacation when this is all done.
I hope in some way I have helped someone with me sharing our adventure in some way. It’s not easy and everyone’s adventure will be different, but in some cases the same. I read in one of the books I have this is the longest goodbye you will ever have. I have experienced a few myself and I know I have more to go until the final goodbye, but I God is with me through it all or I wouldn’t be able to do this at all. Blessings to you all and know you are not alone.
Well we made it through the holidays pretty well. It was a great meal we had at my moms. She even said, “It was the best Christmas she had.“ I personally had several crying sessions, but that seems par for the course as I am sure you all can agree on. But things are changing again around here and that is where the word “Detours” comes into play.
How do you handle detours? Before GPS, map apps and such I would handle them a bit differently then I do now. Without all the special map apps and GPS I would feel lost and confused to tell you the truth. But now with all our gadgets I love having to go on a detours it gives me a chance to see something I might not have seen before.
But I will tell you I don’t like detours when dealing with dementia at all! They say dealing with dementia is being flexible, having patients, etc. This is so true! It seemed that we had things figured out with meals, caregivers, a routine, etc. Well that DETOUR decided to show up and now a new route, routine has to be figured out. I don’t like this disease at all! I wish that there was a new app that will warn you when you have a detour coming up and you might be able to prepare for it. I know in life things can just happen and change at a drop of a hat, but when you have dementia I wish it would just follow some sorta of path and stay on that path without changing that would be so nice.
Thank you all for following me and mom on our journey.
I sit here thinking about Christmas pasts. I have been doing alot of thinking recently not just of the holidays either. It seems that when something major happens to you or in your life you seem to want to reflect on your life. So here is what I have been reflecting on.
So has you know my mom has dementia and I have been trying to handle it the best that I can. But with the holidays things are normal and not so normal as I am learning out quickly. Something that worked at Easter I found out didn’t work at Thanksgiving. So Christmas we are trying something new too. So for Christmas Eve we are having a meal at my moms house where she feels comfortable. I don’t know how you all handle holidays with your loved ones, but if you have any advice I would appreciate it.
So this is now, but I still reflect on Christmas past. Now you have to understand when I was growing up I had a unique childhood is how I like to put it. I was able to not only have one set of parents, but two. I grew up having several Christmas’s every year. For example I would go to my grandparents on my dad’s side then to my grandparents on my (step) moms side then I would venture over to my moms side of the family. So I always said I had three Christmas’s. Now I am grown and have a family of my own and we have done our thing too. Over the years traditions have changed up a bit, family drama and such I am sure you all know what I am talking about on some level. My mom and I haven’t always been close, but we are now and she will always be my mom.
My thoughts now are how long do I have l left, will this be the last Christmas I have with my mom, how long will it be until she forgets me, what is this doing to my kids memory of their grandma just to mention a few thoughts I have going on in my head.
I belong to a few groups on Facebook that one is mainly about dementia support and the other any form of caregivers. I know I am not the only one going through this, but I wanted to share this with you all to let you know you are not alone either. I haven’t been feeling the spirit of Christmas either, but push on for my kids and my hubby. We just put the tree up and the kids decorated it and I bit my tongue as to not discourage them from how they are decorating. They won’t be little to much longer.
So to wrap things up in lack of a better word it is ok not to feel ok!
Merry Blessed Christmas and a Happy Blessed New Year from our house to yours!!!
Sorry I have been MIA for quit awhile, but things have been a little nuts around here for a while. I am sure you all know what that is like. So let’s bring you all up to speed on what has been happening here these past four months or so.
Things have seemed to settled down a little bite which is great, but don’t want to say to much since you don’t know what is right around the corner per say. We finally where able to get some help to come in three times a week to help keep mom company and to keep things organized per say. That took us almost four to five months to get worked out. So short handed is the common thing you hear now a days. We have an Elder Lawyer on the books too to help when the time comes that we will need to make the decision to move my mom to a place that can handle her needs better then I and or helpers can.
Then there was a milestone birthday that my mom had it was a great day for her and for all those evolved. It was so great to see her smile and just not think about (dementia) for a day. The rest of the summer was filled with camps, trips and just enjoying the family. Then school has started back in full swing with all that goes with it from music events for my boys to work for myself it gets to be pretty busy for my family in general. I try to make sure I stay in contact with my mom with calls and to see her at least once a week until things settle down. I will share with you some photos from over the past couple of months here later, but I do have one that I saw on a group that I am part of for dementia and thought it was something to share and remember even though your music has changed you just need to learn to dance a different way and all will work out the way it should.
Blessings to you all and hope you are all well and have a Blessed rest of your week.
I remember growing up where sitting down to a meal was the norm. When it was my turn to set the table you know with plates, silverware, glasses and even napkins. It was a tough job, but someone had to do it (oh and since I set the table that meant I didn’t have to clear or do the dishes…best part ever) As you grow up having meals together change. You go off on your own to college or move out things just change. When I married and we had kids I tried to keep the setting the table and being together, but things change we still eat together, but the table has other things on it so we find a places to sit and lose some of that closeness we had when the kids where younger. Boy the things you think of when you are meaning to share something else, but realize to yourself setting the table and having meals all together really means more then just eating. So that leads me into what I wanted to share about how special sitting down to a meal is…
As you know things have been changing for me and my mom with the dementia. I seem to learn something new everyday about how this thing effects others so differently, but some things the same. So one of those things it does is in how those with dementia eat, drink, etc. They often say I am not hungry even though they haven’t had anything to eat all day, drinking is similar too, but with not drinking that can lead to so many other things as well. It is amazing how fluid fixes moods, health, etc… It is a biggy! Well onto my sharing… last week I made my trip to see my mom and stopped at a few places to pickup fresh produce and a few other things as well. Then saw my mom and we talked like we do and then asked if she was hungry and wanted something to eat. I was all prepared that she would say no I am ok, but she didn’t she said, “I could eat something” I am excited since I had a meal in mind that I knew she would love or at least she use to love you just don’t know, but this time I was right! We talked and she helped and then we sat down together and had our meal together. I was so happy to see her eat everything and even opted for more…mind you I didn’t say anything about how she was eating since I didn’t want to discourage her from doing so, it just made me so happy that she was eating.
You know as I am going on this journey with my mom I don’t know what or how she is feeling on the inside which is so hard since I see on the outside how it seems to affect her. I have things I tell myself all the time “she is still your mother don’t baby her” (which at times you know is hard human instinct and all) then I say “that is not your mother” (you know why I say this too at times it really isn’t her it is the dementia) also I say “I love my mom no matter what” hugs and you see it in her eyes those are the best along with the I love you’s as well. My other main thing I say to myself is “With God’s help we will get thru this together and enjoy every moment you have with your mom either it good or either it bad because one day it will come that she won’t remember me at all and I will be just that person who takes care of her until she is taken to be with God and not be in pain any more” yes this one is a biggy, but it goes thru my mind a lot especially when things may not be going so well.
So I hope what you take away from this is to sit down together where ever you can if its next to your loved one in a hospital bed, at a table, couch, etc… sit and have a meal, or just talk, enjoy your time together and just love that time together as long as you can. Make those times count may they be ever so simple and keep those memories with you always. Blessings to you my friends!
Do you ever think that going grocery shopping can be so tough, confusing, and oh so much work?
Well when you put it into words it can be tough meaning you created a list, but you need to check, recheck and recheck you get the picture. Now with confusing you go over the list and have thoughts about what you would like to make, but then think of something else and then forget what you where thinking about. Oh so much work…well that is the amount of time it takes to do all of this. Try to keep them on task, double check what they wrote down, oh and then there is the actual shopping part. Now it may seem like I am complaining, but I am not at all complaining I am just letting you know what we are going through and hoping it may help you.
As I was going over the list to make sure I was getting the brands that my mother likes I noticed how I had to keep her on task and to keep her calm when she got confused. Now I have been reading a lot of different information on dementia and at that time I just made a mental note some of the information I read I put into use.
So that is my thought of the day about the in-sites of dementia. I just keep reminding myself to take one day at a time and to keep my mom calm and that I love you no matter what.
When I got back from the store we visited for awhile and just enjoyed each other’s company. Do you know my mom has the best laugh! She does and when she said something about having a car so that she can just drive to the places she knows how to get to, but only to get lost along the way, which is probably not a good reason to have a car then. I said with a giggle no, no it’s not. Then we all laughed. These are the things I will remember not the parts about how shopping with dementia was.
Now I don’t have the secret to this all knowing what it is like, but I have a good idea from personal experience, others sharing with me and well I just found this amazing movie that came out in 2020 called “The Father” it is an Anthony Hopkins movie. I just watched the two minute trailer and I was in tears. To me it seems to be spot on how life can be for those with dementia and also those caring for their loved one. I will see here if I can share this trailer with you and I will put this warning out there please have tissues standing by. https://www.rottentomatoes.com/m/the_father_2020
Now on how we have been doing this past few weeks and or days I seem to lose track of when I shared with you all last time. So things have been interesting for lack of a better word. I could say terribly, great, bad, worse, wonderful and just ok, but I like interesting. We have been learning how to care for mom in her home. You know I am a mom and when I see things that mention you become a mother backwards that pretty much is accurate. The main thought I have in the back of my mind is “She is still my mother and you don’t want to baby her and be respectful the best way I can” You know that can be hard specially since I am still a mother to two wonderful boys who are still young. So onto how it has been going. We are looking into in home care a few days a week just to give me a little more piece of mind since I live almost an hour away from my mom and I tell you that isn’t easy either specially when something happens late at night or very early in the morning. We had this happen just this week. So learning experience number 108 now in the books on what to do when smoke detectors go off when it is too hot inside the home. I also want you all to know this too I do not share these things with you in to much detail as to not to offend my mother. This is all about this disease and not my mother’s character. I remember my mom as a loving person who loves her family no matter what. So back on track with what has been happening. We are looking into additional in home care this sounds so much easier then it seems. With the pandemic happening there is a shortage on caregivers. I have called three different places and the same thing we are very short handed. I know the feeling where I work too. But I have a little light hoping it becomes a big light I received a call yesterday about having an assessment today since someone else canceled and I was able to figure out my schedule and well here is hoping that we can get this ball rolling. Figured everything out financially and this seems very feasible for my mom. So this is two things in our favor and other is with God’s help that is three so here we go…
I will share something else as well I have been able to find two great support groups on FB and I continue to learn new things every day and I can share, ask questions and help others too with what I have learned and also realize I am NOT the ONLY ONE going through this either. If you are struggling and or just need some additional support please just send me a message or comment and I can share with you the groups that I have found with you. I do know that I shared with you about one of these groups in an earlier post. Again you are not alone and it is going to be ok and it is ok to ask for help! Blessings to you all!
Like my title says things are changing and it seems so fast too. I have so many thoughts going through my mind throughout the day about this and that oh and I should do this too. It is so hard at times to keep them all straight. This is why I try to stay as busy as I can when I am at work so that I am not bombarded with all my thoughts and concerns about my mom. But then I come home and need to be a mom and a wife and try really hard to stay in that roll too with out my thoughts drifting to my mom as well. Well I get done what I need to for the family, my job and then I will let my thoughts of what I need to take care of for my mom come through and it’s like a flood gate opened up. So I remind myself to take one thought at a time and handle it the best way I can or know how too. So first up in the way of things is getting my mother’s assets figured out. Yep sounds easy right? You would think so yourself…well it is not that easy to take care. So I will line things up for you all first taxes filed. Check, but come to find out we didn’t have everything we needed…so contact the business who did her last years taxes…this requires a trip an hour away with POA in hand and then I get her last years taxes, Check. Then we realized we need her mortgage information so I go looking in her filing system which was good since this was what she did before retiring. No information at all except an old interest statement. So phone call to this bank and was told they changed names and I have nothing with this information as to when this happened. So I asked if I could email them my POA which I then did, but after several holds and a few can you hold again I was told that I needed to come in person with said POA in hand and ID then they will give me the mortgage information. Guess what too, this bank is not a local bank it is over two hours away so road trip is in the works. Then well since we are trying to get our ducks in a row on preplanning my mothers funeral as well. So one trip, two things hopefully taken care very soon just to make sure her assets are in order. Easy right? Throughout all of this happening I have been a little down, worried, sad, you name it I am sure I have felt it. I was looking around Facebook yea I know, but as I was looking a group just popped up, don’t you just just love that when that happens? I sure do. So I came upon this great group called Miss Norma’s Caregivers Retreat. I tell you it’s like my own little support group. There are so many similar stories to ours with those who have loved ones with dementia too. This group was started by the son and daughter-in-law of Driving Miss Norma who passed away on her terms in September of 2016. Their adventures where recorded on Driving Miss Norma’s page on Facebook and they wrote a book about their adventures too. It’s a great read I have the book and have read the book. I just love this group of supporters you can be yourself and share your story along with questions and know you are not alone. Oh, and it not just those with dementia it’s all types of ailments and mainly it’s the caregivers just needing that additional hand and to know you are not alone. If you need a great support group this group is for you. Check them out. It is a private group so you ask to join the group. Minor inconvenience for a great group of caregivers!
Like I said in the last post things have been going so fast and trying to plan so much and and and, but today was a GOOD day!!!
With everything that has been happening and what I have been trying to prepare, take care and and and… I took today as a day to just be. Do you really know how hard that is for someone that has been trying to finish things or to get things taken care of that this is? This is a HARD thing to do is just be! I would catch myself starting to think about well I can do this and that, but said ok no today is for to just be. So my youngest is having his birthday in a few days, but today he decided that we needed to involve his Nana. So we completed what each of us had to do today before going to see Nana. So as we are getting a cake at the store close by we are going over what we need to get and I ask would you like ice cream to go with cake? He was like sure and we see little ice cream containers that has peanut butter and he opted for this since he knew that his Nana loves peanut butter. He was thinking of her for this whole get together. It melted my heart to see this coming from him about how much he cared for his Nana.
So we got to have a good visit with Nana and enjoy pizza, cake, ice cream and oh so many laughs.
It’s been awhile since I last posted, but as the title says I or I should say we have been in the fast lane so it seems. Things seem to be changing everyday. I sometimes don’t know which way I should go and or what I should do next. It seems so uncertain from day to day. Working on our list of things to take care of to help keep mom comfortable and at her home she loves even tho at times she doesn’t realize it’s her home. Things are just moving to fast so it seems.
I know Mother’s Day is right around the corner and I am thinking in the back of my mind will this be the last one that my mom will remember me or even be here. This goes along with my last post of not thinking to far into the future. I just try to think about each day as it comes, but tonight as I type this I am thinking about my mom’s doctors appointment tomorrow what will come from this appointment, what is going to change for her, how am I going to be able to help her and all that jazz. These are things that are on my mind.
Some good things have been happening too. Over the past month I have been able to have some lunches with my mom and family. We got to spend Easter together too. With this extra time I got to spend with her I got to hear a few things from her past which seems at times is where she seems to be and for now she knows me and her grandkids too. She loves her family. She told me that she loved me the other day and was very proud of me and I truly saw it in her eyes. I can’t explain that feeling that I saw it was like looking into someone’s soul and truly seeing them at their most vulnerable moment.
So tomorrow like I said is her next appointment with the Neurologist and I am not sure what is going to happen. I know I have to plan several hours in advance to make sure I can get mom there on time with all that goes into making sure she is ready on time. These are just things you have to do so that the day goes a smoothly has it can go. So you hope. Please don’t think I am complaining, I am not I, am just learning how to navigate thru what I am seeing thru the lens of Dementia.
I thank you for taking the time to read my posts. I hope it helps you in some way or another. This has helped me with getting my feelings out and almost like therapy for me. I would love to hear from you too. Anyone else going through similar things or have anything they would love to share no judgment here just support and to know you are not alone. Blessings to you all and have a Blessed night.