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Monday, March 11, 2013


By Jane Charles a/k/a Amy De Trempe   

             I’ve been away from LadyScribes for a bit due to some changes in my family. My mother, who has dementia, could no longer live on her own and we had to move her to first, an assisted living center, and then to a dementia unit within a nursing home.  She had lived in this house for over 50 years and rarely left it in the past three unless we took her somewhere because she no longer drove.  Well, she thought she could drive but when the car broke down we somehow couldn’t manage to get it fixed.  These decisions were cemented when we realized she had not paid for car insurance, her driver’s license had expired (and I did take her to see if she could even pass the test) and the tags on her car were expired. That was the first wakeup call that mom was on the downhill slide (the car situation took place little over a year ago).
Until recently we had no idea her dementia had progressed as far as it had.  Her days were the same and until somewhere between Thanksgiving and Christmas she forgot how to make coffee (something she did at least twice a day for as long as I could remember), how to do the laundry and cook.  But because she did everything else, we thought an assisted living center would be good. She isn’t a wanderer so that wasn’t a concern. She liked her television and that was about it.  Assisted living seemed to be the answer because she would have her own small apartment and someone to clean, do her laundry and meals were provided.  After being evaluated it was determined she was suited for assisted living
                Well, we soon learned that taking her out of the familiar environment only compounded her symptoms. We gave it a week and it wasn’t working out.  After being told she “needed to leave” (and I don’t blame the facility) I was scrambling to find a dementia unit that had a bed available.  I was shocked to find out how few places there are in my area.  By the way, there are a number of wonderful facilities if you have a decent retirement, own property or have investments. My mother had none of these. She didn’t even own her home any longer having sold it to a family member years before so she could pay off bills.  She is on Medicare and receives Social Security, which covers her groceries and bills.
                So, after thoroughly searching I found three places for dementia/Alzheimer’s patients that also take Medicaid within driving distance of my home and only one had a bed available.  My timing was just right because usually there is a waiting list.  The one in my town has a waiting list as does the one not far away.  The one where my mother now resides is 30 minutes from my home, but it is a wonderful place and I feel lucky we were able to place her there. I could go on and on about the facility and the wonderful people who work there, but I won't. Just know that I consider them the most awesome people in the world. I could never do their job. Their patience, kindness, understanding and love for the residents is beyond anything I have ever witnessed in my life.
                This entire process has been an emotional one, to say the least.  First, moving her out, when she didn’t want to go. No matter how much we tried to explain she fought us. Who wants to leave the house their husband built fifty years ago?  She insisted she was fine, but couldn’t tell you the day of the week, year or the names of her grandchildren. At this point, I am not sure she knows my name, just that I am the baby.  But, she is settling in, thank goodness. When I was there two days ago she was sitting with a woman having a conversation.  I have no clue what they were talking about however and then I wondered if they were like twins.  You know, when twins are little they have their own language that only the two of them can understand. I wonder if that was the way with dementia patients.  I am sure it was nonsense to both of them but I like to believe my mother was connecting with someone outside of the family and that the conversation meant something to her. Don’t anyone tell me differently, I want to believe this.
                There have been up and down moments through this process.  Some of the hardest have been sifting through the memories.  I knew when the family was together this last Christmas that it would be the last in that house with my mother. I tried not to think of it that day, but it was there, in the back of my mind. Heck, she didn’t even realize it was Christmas and kept complaining about all the crap in the neighbors yards. This was the first year we didn’t put up her tree and decorate because we knew she wouldn’t get it.  I put off moving her until after the holidays because I just didn’t want to do it at that time. 
                At least my brother, sister and I am all on the same page and there haven’t been any arguments, but I am her Power of Attorney so it was really difficult to sign those papers and get the ball rolling and I will admit that I did drag my feet the longest of the three of us. 
                Mom is settled now, but the work is not done.  She lived in this house 50 years!!!!  She quilted, knitted, cross-stitched, sewed, read, cooked, collected little house, pottery, baskets and angels. . . And, she hadn’t thrown away a bank statement or anything else in the past 20 year!  Sometimes I am not sure we will ever get through everything.  The first step has been to find any important papers we may need, then shred and burn what isn’t important as well as throw away garbage before we can have a sale. 
                What I have learned from this whole process is:
1) Eat foods that help the brain and memory (dark chocolate is my go-to for that). There is a whole list of healthier options but for the moment, that is the only one I can remember - lol; and
2) Don’t hold onto crap.  I am borrowing a page from my sister’s book “if I haven’t used it in 6 months it is going in the garbage”. 
If I start on my house now, maybe my kids won’t be asking “why the heck did mom keep this” when the time comes.  Room by room my husband and I are purging our house.  We are cleaning closets, drawers, and every corner. It is so easy to just accumulate stuff (a/k/a junk) that doesn’t matter or serve a purpose. 
                Do you find yourself being a pack rat or do you toss when something hasn’t been used within a certain amount of time?  


  1. Much love to you, Jane! What a difficult time for all of you. I hope your mom can settle into a new routine in her new home.

    I'm with you on the purging. I hate clutter. One thing consoles me, I'll never be on one of those hoarder shows!

  2. Deb,

    I cringe when I watch those shows. At least with mom's house everything had a place. My old bedroom was a quilting room and the other bedroom was for her other projects. To walk in the house you would never dream there was so much "stuff".

  3. Jane,
    What a hard time to face in life. I'm sorry you and your siblings have been going through this with your mom. You know, it's believed 80% of communication is nonverbal, so even if your mom and her new friends aren't connecting the words, they are connecting via body language and it's obviously a positive experience for them both. :)

    I think my perspective on hanging on to things is different due to my hospice work. If there isn't a meaningful positive memory associated with something, I get rid of it. The last thing I want at the end of my life is to have my kids or grandkids dragging out items that bring back bad memories. In fact, my daughter found my college yearbook yesterday and even though it was interesting to see what I looked like as a freshman, it brought back all of these sad memories for me. That had to be one of the worst years of my life when I felt so alone and lost. My parents split up, my best friend left after the first semester, and I had my heart broken. All in all, it is a year best left forgotten, so I'm getting rid of the yearbook. Plus, I hate clutter. :)

  4. Samantha,

    I would definitely want to get rid of the unpleasant. In one room I found a box of my stuff from a previous relationship. Pictures, notes, etc. Yep, it hit the burn pile. One thing we have found are photographs. My mother had boxes and boxes, as well as two suitcases full of photos. We couldn't begin to go through them all, but they have been set aside and I am going to have a dinner with the siblings, nieces, nephews,etc and go through and divy them up. Mom already has her favorite pictures with her.

  5. I do hang on to stuff but I'm not in the hoarding class (never want to be either). But well we still have a baby swing upstairs in the attic (my youngest is 8) This is mostly because I haven't wanted to sort everything and have a yard sale.

    My Great Aunt and my Grandmother both suffered from dementia and had to be put in assisted care facilities. My Great Aunt spent every visit we had with her giving us a tour of her new home - including fuse boxes and the 'servants'. She was also given a special watch because she wandered and tried to leave to go back home.

    She was an English teacher and gave me books every year for Christmas and my birthday. My love of reading comes from her.

    My grandmother at 94 almost 2 years ago. She outlived both her husbands and was in good health but she had no purpose in life aside from taking care of her husband. Her mental capabilities deteriorated and after a fender-bender accident my parents moved her to live near them, out of her house of 40 years.

    By the time of her death, she no longer knew me and had a 'boyfriend' at the care facility. That was actually the scariest part was when she mentioned wanting to marry her boyfriend. My mom had power of attorney and had to deal with that issue.

    Best of luck with your mom. I'm glad you found a good facility for her.

    1. Beth,

      I kept a few baby outfits and a maternity dress just in case for the longest time. I had a friend that got rid of everything because she was done having children and got a little surprise. I didn't want to jinx myself - lol.

      My mother was an avid reader as well. She tried to give me back my books because my name was on them (Amy De Trempe) so they must be mine. She didn't get that my name was on it because I was the author. That first time was tough and I finally took the books from her.

  6. Oh, Jane. I can only imagine the process you're going through now, and the turmoil it has caused in your mind.

    I was raised by packrats, and for most of my life I have been one myself. But when I made my recent move, I did a huge purge. I tossed many things that had been with me for move after move, and yet they never left the moving boxes. They just stayed buried at the back of the closet. What's the point of keeping them and moving them time and again? It honestly felt very good to do that.

    My purge inspired both of my parents to begin one of their own. They both still have a long way to go, but I've learned that they've been going through boxes of old stuff, shredding, discarding, or deciding what to keep. Thank goodness, because I'm sure they still won't purge half of what they should. But at least they will begin the process so my siblings and I aren't stuck doing the entire thing.

    Hugs, and I hope I get to see you again soon so I can hug you in person.

    1. Catherine,

      Sometimes I think the best cure for holding onto things is moving. I've been in my house over 20 yrs. Even though there isn't clutter around, there is still stuff in closets and drawers, as well as the attic, that can just go.

      I will gladly take that hug and will collect at RT!

  7. It is amazing the people that you meet at care facilities. My grandmother willingly moved to assisted living 6 years before she passed. Unfortunately,I know more about how to strong-arm weak-willed administrators who may or may not be dumb. I was never certain if it was an act or if she was smart enough to get me off her back. I don't miss this person. But, the staff was amazing. I kind of miss them. But not the drama associated with my grandma. It is a weird situation.

    Good for you for burning old paper stuff. I've burned more checks from the '80's than I care to admit. The weird thing is, Grandma somehow managed to store all of this in her tiny assisted living apartment. I, too, make sure that I now get rid of stuff I don't need.

    Kudos to you. Best wishes for your journey.

    1. Amanda,

      I was amazed at what my mother had stored in desk drawers. I wouldn't have thought it possible but most of those statements were in one large desk drawer.

      Sorry you had drama with the administrator. So far so good for us (cross your fingers - it has only been a month).

  8. Oh, Jane ~ In a way I feel like I've been living this with you the last little while. Each email update you sent about your mother just broke my heart, and I'm so sorry you and your siblings have had to go through this.

    I'm so glad she's in a place now that she can have conversations, whether they mean anything to anyone else or not. And I'm glad it's close enough to you that you can keep an eye on her.

    Am I a pack rat? Sometimes. I'm trying to be better though. And it's probably time for another purge. ;)

    1. Ava,

      You have heard a lot more than most. You are one of my "go-to" friends when I need to unload, vent, share, etc. Thank you. I don't know what I would do without you.

      I am not surprised that you have packrat tendencies either. Though I don't think it is intentional, I just think you are too busy to stay on top of purging.

  9. Oh my goodness, Amy.What an emotional thing to have to do,but it sounds like your mother is extremely lucky to have a wonderful, loving daughter like you. I can't imagine the inner strenght it took for you to get the ball rolling on the process of finding her a home to live in. Kuddos to you! As far as being a pack rat or throwing things away, I am definiley a neat freak. I don't hold onto much! In fact my childhood friend just visited and was shocked when I told her the only baby clothes I kept of my kids were their christening gowns!

    1. Julie,

      You just reminded me that my mother had kept one special outfit from each of her kids: my sisters Christening gown, my brother's boy scout uniform and a favorite dress for me. We haven't found those yet. I wonder where she put them.

  10. I had to do this two years ago with my mother, when we moved her out of her 14 room house to a studio apartment into an assisted living. She couldn't handle living on her own any longer, but she couldn't understand the move, and that this was where she would be living from now on. Its very traumatic on both sides. Good luck to you and your mom.

  11. Nancy,

    You are right, traumatic is the perfect word. My mother didn't understand and I feared she was going to have a panic attack or heart attack and kept begging one of us to take her home.

  12. Oh, Jane, I am so sorry to hear about your mother. When dementia begins, it’s rather subtle. My husband and I went through that with my mother-in-law. The first clue was that she just couldn’t figure out how to balance her checkbook and was unsure of how to write a check. That’s when we tried to convince her to leave her house and move into an assisted living home. She was a widow and living alone was just not good for her and she was lonely. She was hesitant to leave her home, but one day she fell out of bed and could not get up or get to the phone. We finally went over and found her on the floor which necessitated a trip to the hospital. That was the last straw and from the hospital she moved into an assisted living home. She had her own room and some of her own furnishings. She enjoyed being with people and we liked knowing she was getting good meals and snacks, her medicines given to her regularly, her room cleaned and nurses to care for her. She loved playing Bingo and was the Bingo Queen. They even polished her nails. She started dressing nicely every day and she was happy. Then she had a couple of mini strokes and testing showed she was going into dementia. We just moved her to another floor of the home and she got very good care there. Unfortunately, it was difficult for her because there were some patients with dementia who cried for their Mamas a lot and became combative. That’s when my dear MIL withdrew into herself and would just sit in a corner and watch people. It hurt us to see that and we didn’t know what she was thinking.

    Sorry to rattle on, but so many people are going through this and families dealing with it. I know it hurts to not have your loved one remember you, but if they seem to be content and calm, I don’t see how we can ask for much more. Keep them comfortable and love them the way they always loved us.

    1. Connie,

      Thanks for sharing and I am so sorry that you had to go through this with your mother. It is so hard to watch them slip away and lose the abilities/knowledge that they have used for years. We used to take mom to the grocery store and I remember the first time she couldn't write a check and I had to complete it for her and just told her to sign her name (forget trying to get her to use a debit card because she refused to do that before she started to slide into dementia). That is when I started looking back through her statements and cancelled checks and wondered how the heck some of those had been cashed.

      My mother did have two combative incident's after she arrived at her current facility. Both were against CNAs who were pushing another resident in a wheelchair. She became very protect for some reason or took a dislike to the CNA. They have her on medication now and are working with the dose so there are no more incidents.

      I was surprised by how many people I know that have gone through this. Once I said something others did as well. It wasn't that they didn't want to talk about it, it was just so hard to talk about. My mother seems content for the moment, and for that I am extremely grateful.

  13. Oh Jane,
    I am thinking of you and your family through this difficult journey you find yourselves on. It is a heart-breaking thing to witness. My Nana Lil is battling dementia. When I talk to her, it is as though she is on a loop; cycling through several thoughts or ideas. But the loop is getting shorter and the memories less. And it's so hard because she was this vibrant, brilliantly funny woman. Our big line has always been that she is my biggest fan. She was the reader of all things; especially romance. And I so wanted her to see me published before she descends into total dementia. I'm sorry, your post got me thinking about my Nana.
    I find I'm a pack-rat with certain things, and the things I hold onto have evolved. It used to be Bavarian glassware, then depression glass and limoges. Then when my son was born, I cannot relinquish ANY of his stuff. I've got more stuffed animals and brilliant scribble art than I know what to do with! But alas, I shall not share! ; )

    1. Christi,

      It is so hard to part with those brilliant works of art. I remember my husband suggesting that if I didn't start getting rid of some of my children's projects we would need a bigger house. But how can you toss something so precious? I literally have tubs of my kids stuff and that will not be purged (at least not anytime soon).

      I am so sorry you are dealing with this as well and I totally get what you mean about cycling. But, at least she knows/knew you were a writer before the dementia really took hold. I have the memory of my mother reading my first draft because she was an avid reader of romances as well. I'll never forget her first critique. "There is not enough sex." I about lost it. Here, I feared my mother actually reading those scenes because I had written them. I certainly didn't expect that to be her main complaint - lol.

  14. Now that I am volunteering at a retirement home, I am getting a good look at how the mind and body start to fail in the winter of one's life. It is hard to see, but I am doing everything I can to use that knowledge to celebrate my whole and hale self. I even started working out—yes to lose weight, but also because it is a gift that I can run, do pushups, etc. etc.
    As for purger vs packrat, I am mainly a purger. BUT, there are a few things that I can't help but hold on to :)

    Hugs to you and your family, Jane!

    1. Erin,

      I didn't realize you were volunteering at a retirement home. The one thing I always loved about talking to older people are the stories they tell. Though I should work out more, I am learning what I can about the mind and memory. My grandfather also suffered from dementia so it kind of scares me.

  15. I'm sorry sorry you and your family had to deal with this Jane! Hugs and prayers to you all.

    I'm a purger except of my kids' stuff, then I become a packrat. Oh well, I love those little socks, shoes and scrap papers with I wuv u mome on them. :}

    1. Marquita,

      I was impossible for me to toss my kids things. I am sure once I start cleaning out my attic I will find all kinds of memories boxed away.

  16. My family has gone through the same thing only my father is now living with my sister, who has taken on the role of caregiver. Yes, I am a packrat, I have a three bedroom house all to myself with plenty of storage, so there's no pressing reason to get rid of things. I do see the need to go through things and get rid of them, but it's very hard to let go because most of what I have has memories attached.

    1. Barbara,

      That is great that your sister has taken in your father. No matter how much you love someone it is difficult disease to live with 24/7.

  17. So sorry you and your family have had to go through this. My Dad died just 5 yrs ago, and my Mom 18 months later. Neither had gone through the dementia /Alzheimer; but Mother's physical health caused her to have to go live with my sister after Daddy's death. My sister and Mother cleared out the house- but later Mother didn't really remember getting rid of certain things (still in shock with Daddy gone ?).

    I am a pack-rat. Don't think I've (we've) gotten to the stage of 'Hoarder' even if sometimes my daughter thinks we're awfully close. And even when I know I need to get rid of something I can't always do so. If something is in my house, it is 'mine', and I don't want to let go.
    Husband was career military; now he's a United Methodist minister. Moving is part of the equation; so you would think I would be constantly cleaning out. No. And now we are facing another move. I've got less than 3 months to SERIOUSLY go through and get rid of stuff!!!

  18. Reading of your "purging" made me smile only because my mother is now the exact same way. My grandmother died a month before my wedding, so my mother was, needless to say, a bit occupied when it came to dealing with things. It took her 6 months before she was able to start dealing with the house, and believe me...it was an ordeal. My grandmother was not only a hoarder, but a smoker too. Because I was 5 months pregnant by the time I was not allowed to clean so I was relegatted to sorting through her books. In the end my husband estimated between 15-20k books were in her library. My mother declared right then that she would NEVER do that to her children. She now has a similar policy as your sister. If she doesn't use it and can't remember why she bought it it goes to Goodwill.