Wednesday, January 22, 2014

Home Sweet Home?



My grandparents live relatively close to us.  When they go to their winter home, we keep an eye on the place, start the cars, check pipes and that kind of thing.  We've done this for 17 years.  We noticed something needed replaced there so we ordered the part and got it the other day and Sunday we headed over to replace it.

Last year when they went, Grandma didn't recognize the home they bought the year before.  She became scared and agitated and wanted to come home.  So three days later they packed up and spent the winter here.  Grandpa wasn't happy because if it was up to him, he'd leave in October and come back in May.  But keeping her calm was the objective and honestly, we were glad they were back.  They're really not in any condition to be so far away in a new neighborhood where they haven't established relationships with people yet to look after each other.  So it was like they never really went last year.  This year she seems to be adjusting and they've been gone for two weeks so all looks good for Grandpa to enjoy his escape to warmer weather.  I think he knows it may be their last time down there.

You know that saying about making a house a home?  There are many things that go into that from the way you decorate to the smells that people's homes have to the energy in the house.  Even when people aren't there, there is an energy to a space left by the people who live there.

While the Mr was working in the garage, I went in the house to check on things.  I've always loved the smell in there.  You know how older folks homes smell?  Well, their home doesn't smell all antiquey or anything but it's a smell that if it was bottled I'd know it was their house.  It's a scent I can't put my finger on mixed with Grandma's favorite perfume, White Diamonds.  I noticed immediately while it still smelled pretty much the same, something was different.  It didn't smell as heavily of White Diamonds.  This means she's not putting it on and he's not putting it on her.  I went over to her jewelry box I used to obsess over as a kid and opened the drawers.  She moved most of her jewelry to a bigger one she got but the little flippy piece inside still had this old frosted apple necklace I seem to remember from childhood.  I checked the closets and saw old sheets she had in the 80's that I thought were so fancy back then.  I saw the old hamper that sat in her room as long as I can remember in their closet sitting empty.  In the guest room, old Christmas decorations including a blue church that lit up.  She always sat it on angel hair.  Remember that stuff?  It would cut you if you weren't careful!  I learned that the hard way.

I checked the new messages on the machine and one of them was from the cemetery telling them the deed to their graves was ready.  I broke down.  I was glad they were planning ahead but this sealed it that he knows this needed to be done.  As I was looking at all of this stuff in the house, I had the worst feeling.  I was overwhelmed with sadness.  She was gone.  The difference between watching her house from the last time we did it over the whole winter to this time is the last time she was just starting her journey with dementia but all of the things that made up her personality were still there.  This time, I might be lucky for a single moment of her old personality before she drifts off.  This time when she comes home, she won't be coming home.  It felt like going through the house of someone who had passed away.

This isn't one of those things that can be remedied with a peppy "but she's still HERE, you need to enjoy her while she's here" from someone who hasn't gone through it.  Trust me, she's not here anymore.  Those going through it know that once their personality is gone either from the disease or the meds that keep them in that haze, that it is like going through a slow death.  I felt compelled to go through her cookbooks and take pics of the 2-3 recipes she had handwritten in there.  I took pics of the ceramic "Marilyn" her mother made in class and is slated to go to me as I've been obsessed with it since childhood and she wrote my name on the bottom years ago.  I took pics of great grandma's cookbook that goes to my mom, which is funny because she does NOT cook but I know it's the sentimentality of it all.  It's just the most surreal thing to be mourning the loss of someone who is still alive.  It was also like there was a heaviness in the air...like the sadness and toll this is taking on my Grandpa is leaving it's mark on the house.  I don't know how to describe it but the house is changed.  It feels like if it could cry, it would.  I know that sounds insane and I hope no one ever has to know what it feels like to walk into their parents or grandparents home and feel that change.

(This post is part of a "series" I do to help educate others about families living with a loved one suffering through dementia/Alzheimers.  You can read more hereherehere and here.  If you or someone you love has been diagnosed with this disease, please consider getting the book The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Related Dementias, and Memory Loss.  This book was recommended by my grandma's neurologist and it is amazingly informative in what to expect with the disease.  It is available in book, Kindle or audiobook form and is highly recommended by our family)

(This post contains an affiliate link.  Should you choose to buy through it, I will get a nominal kickback to help with blog expenses.)

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24 comments:

  1. When I was a kid we had a family friend who had Alzheimer's and I remember my parents telling me that she did not remember them and I could not understand it at all then. In my young mind I thought surely you could force someone to remember you. This is one of the reasons why I read the book, because I wanted to better understand this disease and, more importantly, know how best to act around Grandma so that I wouldn't upset her. It also helped me get better get through that moment when she first had to ask me who I was. There were no hard feelings. Just an understanding that she cannot help it and that I know deep down I am still in her heart, she just can't quite process all the information anymore. I think it is very important to share these experiences with others because it helps. I don't wish this disease on anyone but unfortunately it will strike others and it is good to know we are not alone.

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    1. That books has been a God send and helps us think of things that we wouldn't even fathom to think about. The fact that at this stage she likely may feel pain but not be able to tell him because she doesn't know how to describe it or even say "ouch" to associate with pain to alert him to something being off. I hope they start taking their temps morning and night so he can spot any changes and get her to the doctor. I know the stages coming up are the ones we've been dreading for 2 years. I'm terrified.

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  2. My grandmother also wore White Diamonds and I know exactly what you mean by their smell and energy. My grandmother passed away 2 yrs ago of dementia. She was in assisted living the last 10 yrs of her life because she could not do simple everyday things anymore and she no longer knew any of us and took us all as strangers and threatening.

    You have bottled her perfume. In your mind. Every once in awhile, I come home or walk into a room in my house and it smells like I remember my grandma's home smelling. At that moment...I know she has made her presence in my home. To me, it's her gently kissing me and hugging me. Strangely...I always hear the word..."Whoopie Doo!". She said this if she was excited or something surprised her. My kids called her "The Whoopie Doo Grandma". I'm glad she has found a way to communicate with me. When I smell her...I always stop and say, "Hi Grandma".

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    1. I'm so sorry for your loss. I think fancy pants grandma's like to wear White Diamonds. ;-) It's like when I think of the way my great grandma's smelled it was more like roses or this one perfume I constant smell on really old women but then you have grandma's that were born in the 30's and 40's and they seem to gravitate toward White Diamonds or Estee Lauder. You know when you smell that, they're with you. I was in a home improvement store once and passed an older lady who smelled like my great grandma who died when I was 8. I swear I almost ran over and hugged her but I really wanted to ask her what it was but I didn't. Funny how those scents never leave you.

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    2. Those scents stay with you for life. My mother wore Tabu, a cheaper perfume by Dana. Her closet smelled of it when I went in there to find a dress for her to wear after she suddenly died. I cried and clung to those dresses. I seldom catch the scent of Tabu anymore, don't know if Dana even makes it anymore, or if the company even exists, but if I did, it would remind me of my lovely mother, gone now for 24 years.

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    3. Amazon carries it...$13-15. I'd buy it before they discontinue it. Always nice to revisit those scents that remind us of loved ones.

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  3. I'm trying so hard not to cry right now since I'm at work.
    I don't know what you're going through and I'm sorry that you have to.
    *hugs*

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    1. Sorry, didn't mean to make ya tear up! :) Pray you never have to go through this and if you know someone who is, offer up an ear. I know my Grandpa feels so alone every day.

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  4. I'm so sorry. There's nothing more I can really say.

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  5. This is so sad. You are 100% right about her not being there anymore even though she's still technically "here". My husband's grandmother has very, very late stage dementia. She has no idea who anyone is anymore and just smiles and laughs at everything. Her children are still under the impression that if they remind her enough, she'll remember who they are and that her smiles are because she loves them, not because of the dementia. They spend every hour of every day with her. However, they also refuse to let her "go" and she keeps receiving invasive life prolonging treatments . The whole situation is extremely painful to watch. While I know each situation is unique, I hope that your grandmother has a peaceful go of it when it is her time to pass and that your family realizes that sometimes quality of life is better than quantity. My thoughts and prayers are with you and your family.

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    1. That is heartbreaking. Just last month my grandpa finally "got it" that she's not coming back at a doctor's appointment. He thought one day she would just snap out of it like the drugs were actually going to make her BETTER. NOTHING makes it better, drugs only attempt to stabilize symptoms and most times they fail. I hope your husband's family comes to their senses on this. As much as I want my grandma around, this is no life she would want to live. She was very private and prideful and if she knew that the entire family knew her most personal business would mortify her. This next year is going to be a tough one...sounds like for both of us. Recommend that book to the family if they don't have it yet. It may be the only way they can understand what the disease is really doing to her.

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  6. I have a great uncle living with dementia. My mother is his closest living relative. Everything you've said is so true, and unfortunately as long as the body is strong you can live with no memory! My uncle severely sprained his wrist last winter and they had to cast it because he kept tearing off the bandage - it didn't hurt and he didn't understand why it was bandaged but the bandage annoyed him. We've watched him regress over the past 5 years. When his dementia was diagnosed he was living in the 80's and 90's, even though it was 2009. Now he's living in the 40's and 50's and wants to go to his childhood home to see his mom who's been dead for 40 years. Sometimes life is cruel. Take advantage of the good days she has. While she may not remember an event or a person's name, she knows the people who love her and care for her. Prayers to you and your family as you travel this road with her.

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    1. Poor thing. I'm so sorry you've been touched by the disease. I can imagine the bandage situation was difficult. They have to be watched all the time when there are situations like that. As far as the time frame issues, I'm afraid she's going through the same thing. I'm thinking she could be drifting back to the early 80's because the other day she apparently told grandpa she wanted to "go upstairs." They haven't had an upstairs in 30 years. When he asked to explain what she meant, she got up and then didn't know what to do. I almost wonder if she meant come home because the direction would be up to come home. That's the thing, they just can't even tell you what they mean. It's the most cruel disease out there.

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  7. Thank you for sharing such a deeply personal post. My husband's grandmother suffered from dementia and I watched it erode a once-vibrant woman into a frightened, confused shell of the person she once was. I'm glad you have so many fond memories of your grandma and that you are sharing this information with others to raise awareness about this condition. My thoughts and prayers go out to you and your family as you travel through this difficult chapter of your lives.

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    1. I'm so sorry you and your husband had to go through that. You feel so helpless as a family member. There's just nothing you can really do to help. I am hoping to help even just one person deal with our experience. That book has really helped us understand what to expect and how to learn to re-communicate with her. Like your first instinct is to ask questions and they can't answer them anymore. They don't know the answer. She doesn't know what she wants for lunch because she doesn't know what lunch is or what food she likes or what the words on the menu mean. I'm glad I have those memories too, I just wish I would've made more when I had the chance. Times I rolled my eyes when she'd call 10x a day with computer problems and now she doesn't use the computer or the phone. What I wouldn't give to be "bothered" with that now. I still have the messages on the machine.

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  8. Thanks for sharing this journey with us Anele. I have never been through anything like this, but can only imagine how difficult it must be to watch that person you love slowly fading away. I really feel badly for your grandfather, it must be so awful for him. I don't blame him for clinging to their old patterns, wanting to go south for the winter like they always did, I'm sure that is his way of keeping his life as "normal" as possible.

    Sometimes when I think about losing my Du, and anticipate with fear the sickness we will go through first, I get so scared. Losing your life partner is the hardest thing most of us will ever experience. Give your Grandpa a big hug for me the next time you see him.

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    1. Yes, I do too. I know it has to be hard for him but on the same token he REFUSES to move into assisted living (NOT a "home" but a nice apartment where people are available to help him if needed day or night). He also refuses to hire a nurse to come and help with things on occasion. We tried to have a friend of my mom's come in and clean and my grandma would follow her from room to room out of earshot of my grandpa and say "I don't want you here!" (!!!) She knew enough in those moments to be threatened by her for some reason. Very eerie.
      I will give Grandpa a big hug for sure.

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  9. Oh Anele, I know this feeling all too well :( It happened with my Nani (my great grandmother). And you are SO right about how they get to the point of not being HERE anymore. It's a truly heart wrenching thing to watch. I wish I could give you a big hug!!!

    Kayla - www.raindropsonmyflipflops.com

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    1. I'm sorry you've had to experience this as well. It's so devastating seeing the shell of your grandparent walking around but her personality completely gone.

      BTW, your wedding video was beautiful!

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  10. As always, my heart goes out to you and you know I understand completely. *wipes tear away*

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  11. Having been through it with my Grandpa, I know how hard it is to go through that process of losing someone slowly. There's nothing any of us can say to make you feel better, but remember that we're all here for you...

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  12. WEll dear girl, thank you for sharing.. those times when we realise the loved one is no longer at home in her body is so stark and hurtful, and how awful it is if that person is your wife or husband. We had my husband's mother and father live with us for their last years. The father had parkinsons, and the mother dementia.. she would get aggressive towards her husband, just wanting him back as a younger fitter man... we tried to keep an eye on them all the days, and when at last their time came, it was father that went first, and for her coping was extremely hard, as she would ask where he was, then say' he's dead isnt he?'... and grieve all over again for a short while, then ask again over and over.. Its truly horrible seeing people that you love and revere suffer from these dreadful things... but at least you have kept them close to you, and I am sure you are a real line of help when he needs you.. All the very best, and hugs from across the pond.. janzi

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