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Our new Reality Living with Dementia and Alzheimer’s

Thank you again for all your emails this past week wondering where I have been!-ha. Our new reality living with Dementia and Alzheimer’s has been quite a shock to say the least. I took a little time off to help get my grandfather situated since he got home from the hospital and short term rehab over a week ago and this week I plan on getting back to normal. Well my new normal! -ha.

our new reality living with dementia and alzheimer's moving into main house

As many of you know, my grandparents were living in the in-law apartment in our garage where we added a second staircase and chair rail lift a little over 6 years ago when they moved in from Florida. When my grandfather was taken to the hospital over a month ago (where he stayed for about a month), it was evident that he would need 24/7 care when he came home.

New Reality Living with Dementia and Alzheimer’s

our new reality living with dementia and alzheimer's moving into main house

The doctors were recommending that he either have 24/7 care at home or be admitted to a nursing home. A nursing home was absolutely out of the question so we opted to move both my grandparents into the main part of the house. This change was very difficult for not only my grandfather but my grandmother. She literally lost her husband (his ability to care for her and him) and her home as she knew it.

The family pitched in and helped my gram go through 60 years worth of stuff and figure out what needed to be donated and trashed. Have you ever helped someone who grew up in the depression weed through their stuff? Needless to say, that was a project.

our new reality living with dementia and alzheimer's moving into main house

It wasn’t ideal doing this without my grandfather but unfortunately, we had zero time and were under pressure to get everything done in a week. We made 6 trips to the Salvation Army to donate a gabillion items along with a dumpster full of trash. I think they saved every envelope they had ever gotten in the mail for the last 67 years they have been married.

our new reality living with dementia and alzheimer's moving into main house

While my grandparents have always been in the same house, they had an interior door off of our kitchen / foyer area that led to the garage that they could shut and have privacy. Well the privacy is basically gone now for them as we needed to create a new TV room and bedroom literally in the middle of our house so we could keep an eye on my grandfather.

our new reality living with dementia and alzheimer's moving into main house | How to Cope and Live with Dementia

Our lower level has a large open kitchen / family room, a bathroom and two large rooms that were the playroom and storage area.

We turned the playroom into a new tv room for my grandparents and the storage area that was for all my blog decorating stuff is now their bedroom. It’s not perfect and by no means gives them the privacy they had, but it’s the only way we can keep my grandfather home and out of a nursing home. Here is a picture of the playroom during Christmas that is now their TV room.

our new reality living with dementia and alzheimer's moving into main house

Our new reality living with my grandfather’s dementia and Alzheimer’s disease has literally rocked our house. My grandfather’s disease has been prevalent for years but he has gotten worse as time has gone by but he (and we) were always able to manage and cope but last month, he had a huge break in reality and basically failed years in one afternoon. Dementia and Alzheimer’s disease has no boundaries and it takes over your loved one’s life (and the family) with no notice. We are hanging in there and trying to adjust to our new normal. One thing is for sure though, we are all dedicated to keeping him home and out of a nursing home. He knows he is in a different living space now but he gets it confused with the old living space. He gets very disoriented as to where the kitchen is, the bathroom ect. BUT then he has moments of clarity where he is super sharp and totally on the ball. It’s a minute by minute disease that has a mind of its own.

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37 Comments

  1. I am sending your family BIG HUGS today. When I read your story, I am also reading MY story. I was told by one of my Alz group members that caring for your loved one at home “doesn’t take much, but it will take all you’ve got”. Of course, that applies to a lot of things that are put before us. Keep your heart warming posts coming. mickie

    1. Hi Mickie, it’s definitely not easy! lol . Whoever told you that clearly wasn’t living with a person who has full blown dementia and Alz. -ha. It’s family though so it’s just what we do. Family takes care of family and that’s it. There really isn’t any other way as far as we are concerned 😉 Than you for your kind words and stay in touch!

  2. Kate Horrell says:

    Jessica y’all have the patience of a Saint. I mean that in the best way, to be able to take care of ur family like u do is really remarkable. I worked with a lady yrs ago, when I was a vet tech at the local Humane Society, who was in her 80’s n had dementia and everyday was a struggle just find things that she placed around the room. Sometimes we would find all the trash in the cabinets and all the meds in the trash can, she would take the grooming supplies home with her then months later show up at work with all the clippers, scissors, shampoo, n tell us she found them at home n she wanted to donate them to the shelter, one time she went into the laundry room turned on the water n flooded out the cat room. So I really do mean that there is Sainthood for. LOL

    1. Yep you are right, my grandfather does similar stuff now. He honestly just crashed and burned in an afternoon. It’s like multi personalities. Literally. Sometimes he is sharp as a tack and the next hour confused about where the bathroom is. It’s the strangest thing. We often try to have humor with it because I think we would all go nuts if we didn’t lol. 😉

  3. Prayers lifted for your family. Alzheimer’s disease is no joke! We are currently dealing with my 84 year old mother-in-law’s progressing Alzheimer’s disease. She currently lives at home with my 88 year old father-in-law that still drives! (no, not kidding) He has always been pretty sharp, but we are seeing the toll that her disease combined with his age is taking on his mental status and overall health. He’s just not as sharp as he was going as far as making a trip to a local cardiologist (not his btw) and just walking in and saying he needed to see a doctor. My husband and I have been making all of their appointments for the past 3 years and we handle all of their meds in this 31 day MedCenter. They each have one, hers is decorated with flowers cut from decorative duct tape so that we can tell them apart if she decides to ‘play’ around with the meds. (we cut the small flowers out and decorated each pill box so that they don’t get mixed up.) Anyway, we have now taken him for an emergency visit with his regular cardiologist that he just saw in December. He is now having additional heart complications that he didn’t have before. I’m telling you all this to say, the stress can be very bad on the caretakers. My husband and I care for them the best we can from home and frequent visits. We live about 20 minutes away. Doesn’t sound far, does it? Well, it does when you just walked in the door and get a call and have to head right back. Having your grandparents in the same house with you I know must be hard too. In addition, my brother-in-law has early onset Alzheimer’s disease and lives alone. Totally alone. We also look after him from our home 20 miles away. He is also an alcoholic (which Dr’s think may be a contributing factor to his early onset disease) so he can’t stay with us. We have two small children and we just can’t take that on. Just not safe and we aren’t willing to sacrifice their safety for his. We just can’t. We pray that we can get him into a facility by the end of the month. It’s not a full time job to take care of someone with Alzheimer’s. It’s more like two full time jobs. Add to that all the other things that you need to be doing for your family just for day to day life and it’s unbelievable. Alzheimer’s is a TERRIBLE CRUEL disease that takes it’s toll not only on the patient, but with all the people that love and care for them.

    1. Oh my goodness! So sorry you have all this family stuff including your brother-in-law! It’s crazy since I started writing about my grandfather these past few months all the people that are going through very similar situations. You are right, it’s a crazy thing to live with and stressful for sure on all involve. The meds and doctor apt.s alone are so time consuming. Our state has elder care services that do help with some things ….maybe your state does too? We are in Mass. Hang in there and stay in touch!

    2. It is extremely difficult to take cate of a person with dementia especially when your partner is not supportive. You keep helping each other out. May God Bless You. My mother is 91. At this moment Iam staying with her 24-7. I have some help but is difficult when you cam trust the people who are supposed o help with my moms care. Its saddened me to hear what goes on with the elderly who have noone to care and protect them.

      1. Oh good luck Carmen. It’s not easy and very hard to watch. Take care of yourself as that is just as important ❤️

  4. This is a great posting, Jessica. First of all, having lived this with my mom, I want to say the “Living with Dementia” poster is perfect. Some of these are things I learned the hard way. After attending some training that taught these same principles, I realized that by trying to “fix” my mom, I was adding one more layer of stress to her, and I learned to enter her thoughts with her instead of trying to correct them. I also want to say that I’ve been following this …and I see the devotion you have for him. That’s the best thing you can give him every day. Reaching out to him..touching and loving. God bless your hearts.

    1. THanks so much for your sweet words and encouragement! It’s definitely a hard thing to not try and “do everything” and “fix” them. We just kind of let him do his thing and as long as he isn’t hurting himself or anyone else, we just kind of role with it. -ha.

  5. Your family is amazing! I don’t know if I could do what you do. Although, I realize we all do what we have to do when the time comes and with God’s grace we get through it. I have the utmost admiration for you. Thank you for sharing your difficult — and real — journey with your readers. It’s difficult to read so I can only imagine how difficult it is to live. God bless you all!

  6. Trician N says:

    My heart goes out to all of you, especially your Grandfather & Grandmother. I know how heartbreaking this is for you. My very good friend was just officially diagnosed with the same and she is only 58! Prayers to your entire family.

    1. Hey, I’ve recently been diagnosed with early onset… I’m only 56…My granddaughter is typing this …it’s heartbreaking to know I can’t be independent any more.

  7. Jacquelyn Kinsman says:

    Feeling your Pain! Had to put my mother in a nursing home (when my own family was having a division) Even though private paying she paid a FORTUNE and that was 20 years ago! she still had to share her room with a stranger! My mother in law came home from a hospital stay and within the hour (!!) her mind was gone. Terrible thing to live through. Yes, they save it all (in case)! We clean and do that which we have to and we do survive. It is an adjustment for all as well as disruptive, but worth it all. I have never regretted my decisions to do for either of them. You can be very proud of yourself!! Hugs Jacquelyn

  8. Cheryl Autrey says:

    Praying continually for all of you as you take up your new normal. It is so hard seeing your love ones going through this. So glad you are able to keep him home with your grandmother. Sending Love and Hugs as well as my prayers.

  9. I think it is commendable to try and keep your grandfather at home with 24 care and hope that you can make it work. Our father had to be moved to a facility due to various issues, and it has changed how I see nursing homes and specifically memory care facilities. He is safe from wandering – the facility is fully locked for safety. They have numerous activities to keep him as engaged as possible, which is an improvement from his days of being just on his home, with a caretaker, tv and some visitors here and there. The staff is caring and keeps us informed and engaged, It has taken time and conversations with dementia specialists to find any level of peace with this, but having him at home would have put him at greater risk. Every situation is different, resources different, but just wanted to offer up that sometimes a facility isn’t as horrible as it sounds – sometimes it is the best option for the person suffering as well as caregivers for a variety of reasons, as long as it is a well run facility staffed by caring individuals (staff retention is a good indication of a well run facility!) May your adjustment go well and may your grandfather stay safe at home for as low as he is able, hopefully for the remainder of his days.

    1. Hi, totally agree. If my grandfather becomes a danger to himself or others then we will have to look into other options. We found a great Adult Day Health program (we call it camp) that he goes to during the week for 6 hours where he can socialize and play games ect. and then we have a couple people who work from 2-7 caring for him ect. Hopefully we can keep him home but you are right, sometimes with the best intentions, there is only so much that can be done 😉

  10. Hi Jessica, I so admire your family’s decision to keep your grandfather home with you. I know exactly what you are going through.
    My father has suffered from Alzheimer’s disease for 10 years now. I never thought this disease would consume so many years of his life. Our family too, has kept him home and out of a nursing home. My mother and sisters care for him, along with 2 aides. (I live out of state) It is such a horrible disease and so sad to watch. Hang in there, its a tough battle but know your grandfather will be getting better care with you than a nursing home.

    1. Thank you for your words of encouragement. That is great your dad is still home and has a great family support. I always wonder how elderly who have no family end up in these cases. I mean, I know they end up in a nursing home most likely or end up home alone but I can’t even keep my grandfather’s meds and state of mind straight, it’s awful to think of how an elderly person does it on their own. Stay in touch! 😉

  11. Hang in there! This will be hard on everybody !we lost my mom to this ! Enjoy your time !

  12. I have read your blog for a few years now, but I will admit that I check in now hoping to hear about your Grandfather. I am not dealing with Alzheimers within my family, but we did lose my stepfather just over a year ago. It took months of traveling to a different state to help my mom downsize her large home so she could move closer to family (20+++ carloads to the thrift store!). After we lost my stepdad, I swear EVERY older gentleman that I saw at the store was bald, wore wire rimmed glasses, a Veteran’s cap and super white tennis shoes! It made me smile every time you shared a photo of your grandfather. 🙂 I have a new normal now, too, being there for my mom in a different way and dealing with some health problems that my husband has. I admire the love and dedication that you have for your grandparents. Know that so many of us share a connection to you and your family. I wish you calm and peace on this journey. Much love.

    1. aww thank you so much for your sweet comment 🙂 Sorry about your stepfather :(. It’s not easy pushing through family change that’s for sure. I am glad you like hearing about him 🙂

  13. Bless you for caring for your grandparents! What a honor it must be! Many prayers for all of you.

  14. Your family is blessed to have each other. Good for you to keep your grandfather at home. You will make it work as best you can. Love somehow makes hardships bearable. Sending you a big hug.

  15. You are indeed facing great challenges. I have been through it. May God be with you and your family.

  16. Jessica,
    You keep it up girl. Ya’ll are doing the right thing. Never doubt that.

  17. Barbara Whitaker says:

    My mom ended up not knowing me, my mother in law asked me when her son (my husband) and I were getting married. We never laughed or corrected either of them. God sometimes has a plan, maybe in my mom’s case she didn’t need to remember childhood abuse by a step parent. She had only great memories.

    My mother in law (who had breast cancer and a breast removed many years before) when I was helping her with her bath, said something about drying off. I mentioned her breast removal and she denied it ever happened. Not a bad thing to forget.

    God’s plans aren’t our plans, and we just have to roll with it….

  18. Debe Bryerton says:

    May God bless you richly as you show such love and devotion to your family!! Thank you for sharing your story. 🙂

  19. Jessica, thank you for sharing your grandfather’s story. My mother suffered from Alzheimer’s and my sister graciously opened her home to both my parents. With a little construction, they were able to turn their living room into a bedroom with bath. My sister and her husband work full-time so a 24/7 caregiver was hired to help.

    Alzheimer’s is no fun and I found the best way to deal with it is to keep a bit of humor, and expect the unexpected. I love that your family is so close and cares for each other. You’re an amazing woman! Hugs to your grandpa (and you). Love the picture of him in bed with who I’m assuming is his great grandson. That touched my heart. I have a picture of my mother in bed holding her newest great grandson. It’s the last photo I took of her, but I’ll always remember that day.

    Bless you!

    1. THank you so much Jen for stopping by 🙂 I appreciate you kind words :). Yes, it’s definitely a different kind of battle each day. That is so great that your mom was able to stay with your sister. It’s not easy but I wouldn’t trade this way of living for anything. It’s kind of crazy at times but it’s just our norm. -ha. You are right, keep the humor! Some of the stuff he does is so funny (I mean it’s not but it is) , I can’t help but laugh. Thanks again Jen and sorry to hear about your mom. I love that you have a picture though of her and her great grandson. I know what you mean by remembering pictures. Many of the pictures I take of my grandparents, I remember them so clear. Have a great weekend!

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