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I have experience caring for dementia patients - but this is my Grandmother!
Posted: Tuesday, October 8, 2019 1:16 PM
Joined: 10/8/2019
Posts: 1

Hi, my name is Angie, and in the next 2 weeks I am preparing for my grandmother to come stay with me for a month, likely longer.  This is my story and it will likely be pretty long (I am known to be long winded when it comes to something important to me) You were warned lol.

Almost 2 yrs ago my grandmother was disgnosed with dementia, at that time she lived at home alone. (my grandfather passed away in 2006 from esophageal cancer that eventaully spread into his bones)  My aunt and my mother both would check in on her every day.  (my mom lived about 5 minutes from her in MD my Aunt lives 6 hours from them in southern VA) The thing to remember about my grandmother is she is an extremely independent, introverted person.  Perfectly happy to be sitting in front of he TV watching westerns, Andy Griffith, or BBC shows like Last of the Summer Wine. She spent her days after my grandfather passed in her nightgown watching TV and only venturing out if she had a DR appointment, a holiday with family, or to the store.  This was my grandmother as I have always known her.  (she and my grandfather raised me till i was 5 because my mom was unable to care for me after my biological father passed when I was 9 months old)  I was always close with them and even spent every other friday night with them until I was 17 yrs old.

Due to her introverted personality it was not odd of her not answering her door (God forbid she be caught dead by anyone in her old house dress and no makeup)  So, visits to HER were fairly rare.   During one of the calls my Aunt made she asked my grandmother if she had been taking her insulin. (as my grandmother kept saying things like "this house looks different, something doesnt seem right")  When my grandmother swore up down left and right she never had taken ANY medication and WHAT was my Aunt talking about, my aunt called my mom and dad, who promptly took her to the ER.  

Turned out my grandmother had a stroke.  Her house looked like a tornado went through it, even all her clothes were ripped out ofher closet and strewn about her bedroom. (she never slept in her bedroom but on a bed in her den with the TV)  After some time in the hospital it was decided that my grandmother would stay with my mom and dad since my Aunt lived so far away.  Yet they were going to do 3 months on and 3 months off between them. 

Keep in mind that almost 10 years ago my mother herself had suffered SEVERAL mini strokes in her late 40s due to high blood pressure.  This is why the decision was made she would travel back and forth between the two, NONE of us want her in a nursing home and neither my mom nor my aunt work.  (both on disability as my aunt has severe back issues and my moms issues from her strokes as well as stage 4 kidney disease)

What would have been 3 months turned into a year for my parents, due to another stroke my grandmother had leaving her almost blind. (her vision wavers sometimes she can read her watch other times she cant see much of anything)  This past summer my mom and dad took her to my Aunt to stay for 3 months.  But during this time so much happened.

About a month after my grandmother was in VA with my Aunt, my mother was diagnosed with breast cancer.  So they decided my Aunt would keep her till mom got through her surgery and see where to go from there.  About a month after my moms diagnosis my Aunt was sent to the ER due to a minor heart attack, and a 100%  blockage was found in one of her arteries that was so severe her artery had actually branched out and AROUND the blockage (of course when an artery does this it is not large enough to accomodate the blood flow and she will have to eventually have bypass surgery.) During this time my aunts step-son and his wife sat with my grandmother until my Aunt was released.  Of course, once released my aunt had no time to rest she has been non stop with my grandmother.

After my mothers surgery they informed her she would need to have radation.  (she cannot do chemo due to her kidney disease)  Nobody was really expecting that, as my mom had caught the cancer early.  

The weekend before the surgery my mom & dad went to VA to visit my aunt & uncle (and other family members who live there as well)  I live in SC and my husband, daughter and myself decided to take a weekend trip up to see them. (my parents live 9 hrs from me and my Aunt is only 5) During that trip I told my Aunt since I am a stay at home mom/wife and don't work if at ANY time they needed help just to call. 

Last week, she called.

My mom was going to get my grandmother after surgery but with the radiation and recovery time they didnt know when that would be.  My aunt was stressed, and terrified the stress was going to trigger a second heart attack.  My normally soft spoken southern aunt almost sounded like she was about to have a heart attack on the phone with me, and I found myself for the first time in my 37 years of existance telling HER to calm down and breathe. 

My aunt and I are super close, my mom and I never had the best relationship but she IS my mom and I love her very much as she does me, our personalities just clash at times. (sad to say but since her diagnosis of cancer we have become much closer and I am happy for that.) 

In my early 20's I spent nearly 6 years working in 2 differnt nursing homes that BOTH specialized in the care of alzheimers and dementia patients.  I was around them all the time I knew how to care for them, speak with them, calm them.  How to approach them.  I had TRAINING for it.  But my soft heart couldn't take the deaths, and when one lady passed IN MY ARMS, I ended up quitting.  And as I got older I kicked myself for walking away so easy, death is part of life I'm older now and get that, back then it broke my tender heart way to easy.  

I often found myself CAUTIOUSLY (trying not to step on toes of my aunt or mom - or dad and uncle even for that matter) offering advice and what I learned in MY experience because of all of us I was the one with the actual experience.  

For the past week I have, for the first time in over a decade, found myself greatful for my experience and training.  Everything happens for a reason, and now I know the reason I got the experience I did, even if it never panned out into a career.

My spare bedroom is being transformed into a little oasis, TV (with roku for netflix and her westerns!) radio, recliner, and a queen size bed since my grandmother is an introvert she prefers her own private space.  She can walk fine but needs somebody to walk with her because of her vision.  For me this is the PERFECT set up for her.  She has her own space (which she does at my mom and Aunts as well but they tend to put her in the living room with them and not so much in her room unless she is tired and wants to go to bed)  If I need to go get groceries 5 min down the road, my 16 (17 in 2 months) daughter can be there to sit with her should she need something and if its nothing she can do she can call me and I can be back in 5 minutes. I want to make her life as peaceful and happy as I possibly can.  

She doesnt get COMBATIVE but she does get very aggitated and WILL cuss you up one wall and back down the other and YELL, and if she doesnt remember why she is mad but knows she IS, she will just give the silent treatment.  She did one time litterally walk out of my parents home (before the second stroke that impaired her vision) due to a memory of a time my grandfather having an affair and my parents had to call the police to get her.  Since then she was prescribed seroquel which they hide in a sugar free cookie (my grandmother has a weakness for sweets) and give her if she starts showing signs of aggitation.  She does feel like a burden and when she discovered my moms cancer diagnosis she started back in on her "just put me in a home I'm too much for you girls" speal. (something she does time to time when she feels like she is a burden or too much to handle) But this is not something ANY of us want.

With everything going on the past 2 years and feeling like I am in Timbuktu in SC and unable to help, I eagerly jumped on the chance to help with my grandmother, ESPECIALLY given my experience.  That being said I a hopeless optimist but NOT naive.  I HOPE she has an excellent time with me, her short term memory is pretty bad (we were there 2 days and both mornings my aunt had to reminder her WHO was there, she knew SOMEBODY was but not WHO) But her older memories are still there, once you strike on the right memory she is off to the races with stories.  It will give MY daughter a chance to hear the stories of her great-grandmother, and let me spend some time with her that I havent in a very long time.  HOWEVER, as I said, I am not naive, and already told my husband and daughter if she says something in her aggigation and Im in my room bawling my eyes out later for them to just understand and give me MY space, that I dont need reminded its the dementia and not her saying it, because I will know, I will just need them to hug me and let me get through it myself.  I FULLY expect this. I suffer from my own bouts of anxiety, depression, and panic attacks, but I have learned how to get past them and move on.

I have experience with caring for dementia and Alzheimers patients, but this is my grandmother.  My patience will be 1000x higher but my soft heart will be 1000x softer as well.  It feels like a catch 22. I want to do this, and have no doubts I have the ability.  I know there will be times I have to be more stern about things ("I can't let you just lay in the bed ALL day mommom, bed sores are a thing and not fun!") But again, its my grandmother.  This isn't going to be like caring for other people I never knew growing up, or cared for me.  This is the woman who as I bring her her breakfast in the morning I'm going to remind her how she was the one that brought me MINE when I was little and now its MY turn to spoil HER.  The one I fully plan to get dressed up in my PJs with, drag my 16 yr old off her phone and pile in the queen bed with my grandmother and watch Wizard of OZ, and BedKnobs and Broomsticks.  This is my chance to make those new memories with my daughter and her great-grandmother, and relive some with my grandmother.  I want her to have MY house as her little "vacation" from my aunt and mom.  Because I have already told them both if they need me I AM here.  (I have even already planned to take her back in January as its when my birthday is, and as of now don't have a "time for her to go home" date picked after that.  Even going as far as to get the  information for a lab near my home so when she has to have bloodwork done in January I will take her.)

Of course, it makes me a tiny bit guilty I am not keeping her through December, but my Aunt will have her (we are taking her back at Thanksgiving and spending Thanksgiving with them) But for me, my daughter turns 17 in Dec. and God knows NEXT year when she is 18 she will likely (like anyone that age) not even want to be HOME for her birthday. This is the last time I get to do this and I want to focus on HER for that month. With her birthday and Christmas 2 weeks apart, I wanted to make Dec.  my month to focus on HER.  So when I was asked if I could do some of Dec I did say no, for that reason, and of course EVERYONE understood. After discussing it with my husband I called back and said even though I couldnt do December I would GLADLY have her in January for HOWEVER long I was needed, simply because my birthday is January and I would LOVE to spend it with her.  But I still can't shake that sense of guilt like I chose my daughter over my grandmother for that month.

I am here because I KNOW I have the ability to care for her, even more so than my mom or Aunt given my experience. I WANT to do this, and I am looking forward to doing this.  HOWEVER, its STILL my grandmother, and its not like I can just go home at the end of the day, I am aware and prepared for that.  But I know its going to be a drain mentally and likely physically as well. I know the support from others who are caring for family members will be a great help.  

Thank you to everyone who took the time to read this long book.  Words of wisdom, advice, ANYTHING are MORE than welcome!  

Posted: Wednesday, October 9, 2019 11:31 PM
Joined: 5/12/2018
Posts: 83

Lovely for you to vent and share your thoughts.  Nice book  

Do not feel guilty for wanting to spoil your daughter, just as you want to spoil your grandmother, it is all for the right reasons.  Events happen, years go by, you'll never get her 17th or 18th Birthday back, and sounds like Grandma has lived a good life with more family to care for her.  

I am so happy that you have your family connection to be able to do so, enjoy your life, don't feel guilty.  

You sound like an amazing woman, Bravo to you. 



Posted: Thursday, October 10, 2019 2:11 PM
Joined: 4/1/2014
Posts: 5012

I took my mother into my home over 14 years ago during the time when she could still communicate. We had many good times together. I cherish those times, and those memories are something I would not have had if I hadn't brought her to live with me.

 The fact that this is your grandmother should have no bearing on your decision. Either you can have desire, time, means and ability to care for a family member, or not. Some people know they will rise to whatever is needed to get a job done-others aren't so sure. There is no shame in admitting later that the time has come for finding other solutions to the issue. It could be a move to a care home, or nursing home, or to another relative's home.

I thought I would put my mother into a facility when she forgot who I was-but I couldn't do that. Then I thought I would do it when she became incontinent-but I learned to handle that too. Then I thought when she became bed bound I could put her in because what's the difference in being in bed at my house or in a nursing home-but that has come too. Along the way I learned to be adept at caregiving. You have a leg up since you already know what needs to be done. As for being strong emotionally-that takes more out of me-but I make sure I have plenty of time to unwind, friends to relax with and support from helpers, family and friends.

 There is no reason you and your grandmother cannot have many more meaningful and lovely times together. Mom and I had so much fun the first 8-9 years-and it's made these past few years of sadness tolerable. If I hadn't taken her in, she and I both would have been miserable and would have missed out on so much love and laughter. Don't worry about the negatives that will surely come to pass in the future. Live life joyfully now.  Good luck!

Posted: Friday, October 11, 2019 1:44 AM
Joined: 5/12/2018
Posts: 83

I thought I would put my mother into a facility when she forgot who I was-but I couldn't do that. Then I thought I would do it when she became incontinent-but I learned to handle that too. Then I thought when she became bed bound I could put her in because what's the difference in being in bed at my house or in a nursing home-but that has come too. Along the way I learned to be adept at caregiving. You have a leg up since you already know what needs to be done. As for being strong emotionally-that takes more out of me-but I make sure I have plenty of time to unwind, friends to relax with and support from helpers, family and friends.


Just rereading Angie's post again.  Tess great wisdom you write herein.   

So many things have happened that I didn't think I could do any more and they passed and okay clockwork I'm just doing them now.  I havent had the great  resource of family but friends and hired help is key for me now.  

dementia life
Posted: Saturday, October 19, 2019 6:14 PM
Joined: 10/7/2019
Posts: 1

your grandmother is lucky to have all of the family involved. I DID read it all: )


Posted: Tuesday, October 22, 2019 1:44 PM
Joined: 11/13/2014
Posts: 2192

You are a kind grandaughter, It is difficult.
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