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It's over: what I've learned
JanisO
Posted: Friday, December 20, 2019 9:42 AM
Joined: 3/5/2017
Posts: 179


Five and a half years of caregiving, and she died Wednesday. Here's what I've taken away from this experience:

1. Stay on this forum, come back for the most excellent advice from those in the trenches. Even if some people tick you off (we all deal with it in our own way), this place has helped me the most. Thanks especially to Tess C, His Daughter, Lickety Glitz and VKB (I for one needed those Bible verses!).

2. Educate yourself. I have a library full of books on dementia. I knew more about it than any of her hospice personnel! 

3. Be prepared for the death, stuff wise. I thought I was prepared but the paperwork and the stuff she left behind is driving me nuts now. 

4. I've had to deal with people weeping and crying about her death. These were people who knew her pre-dementia and didn't bother coming around or even asking about her during these last five years. Hug them, suck it up and don't get mad. They will go away again. 

5. Forgive yourself. I was not, like TessC and some others, a loving caregiver. I resented the years I've had taken away. I tried not to show it when I was around her, which is hard. DO REMEMBER that dementia is talking, not your LO. My other mom went away five years ago.

6. Fight, fight,fight  to maintain your life. It is not selfish. I gave up my job and many friends and activities. But I paid a lot of money so that she could be cared for when I traveled, spent time with my husband and especially my grandkids. She is gone, the important people in my life are not. I could have let this take over my life so that it was all I did. But that is wrong.

7. The worse part for me was this: How long? You know it is not going to go on forever, it does end. But it is so hard to hang in there. Do what you can to save yourself: placement, trust in God, family, friends. This is the hardest thing you will ever do.

Thank you and I love all of you,

JanisO


brandymason260
Posted: Friday, December 20, 2019 10:01 AM
Joined: 12/19/2019
Posts: 4


I'm so sorry you have gone through this. But thank you so much for sharing this.

 I just joined yesterday and I desperately needed to read 5-7. I married my husband in June and moved 2.5 hrs from the only home I've known, my career and large family to "help" take care of FIL. It's more than I can do alone and I feel guilty if I say anything negative or complain. There are days I can't stand him. DH doesn't want to force him to follow a schedule or follow dr recommendations, diets, exercise, etc. I feel trapped. All of my things except clothing and toiletries are in storage. We all sleep in the same room. I have PTSD from a previous marriage and he talks to me similarly - I'm stupid, fat, useless, poor housekeeper, headstrong, and a liar - to the point of having panic attacks again. He makes accusations and threats against my children. I can't leave him long enough to make friends or do any activities for myself and feel guilty asking for help. It's swallowing me up, affecting my marriage and my relationships with my kids. Your post was a reality check that I needed to hear. Sorry for rambling. But I appreciate you. 


harshedbuzz
Posted: Friday, December 20, 2019 10:34 AM
Joined: 3/6/2017
Posts: 2010


Please accept my sincere condolences on the loss of your mom.

And thank you for you wisdom.

 


SunnyBeBe
Posted: Friday, December 20, 2019 11:06 AM
Joined: 10/9/2014
Posts: 903


JanisO,

I'm so sorry for the loss of your mother.  I can't imagine how difficult it is. 

I am caregiver for my cousin and that has been hard, but, with a mother.....it must be even more painful seeing the end. 

I appreciate your list. It's true for sure. What did startle me was reading that family and friends who disappeared 5 years ago would resurface at time of death!!! Are you kidding me?  All these past 5 1/2 years that I have been caregiving SOLO.  NO help, no card, no calls, and then they will resurface at the cemetery?  I'm still trying to process it.  Thanks for the warning. It's not that I have anger....it's just nothingness towards them. 


Eric L
Posted: Friday, December 20, 2019 12:05 PM
Joined: 12/5/2014
Posts: 1252


Sunny - My MIL and her brother had been estranged since their father passed. Last May, we thought MIL was in her last days so we made sure to contact friends and family to say any last goodbyes. Lo and behold, her brother showed up. To the best of our knowledge, he didn't make any sort of effort to reconnect with his sister until the (supposed) end when she really didn't know anyone. She rebounded and held on for a few more months (how, we don't know).

We basically see the same people now that we did when she was sick. One of her sisters came out almost every weekend and we still see her a couple of times a month. A couple of friends would show up and here and there and they still show up here and there. Other than that, nothing.
PaniniSandwich
Posted: Friday, December 20, 2019 2:59 PM
Joined: 7/1/2017
Posts: 131


JanisO I am so very sorry for your loss.  I want to thank you for taking the time to share your very wise and kind words of advice to the rest of us.
abc123
Posted: Friday, December 20, 2019 3:05 PM
Joined: 6/12/2016
Posts: 766


Dear Janis, thanks for being honest. I totally relate to your feelings. I hate this disease for so many reasons and the list gets longer each day. I'm sorry your Mother was taken away from you years ago. I'm glad you have your life back. I wish you the best of everything. Merry Christmas.
TessC
Posted: Saturday, December 21, 2019 5:35 PM
Joined: 4/1/2014
Posts: 5014


JanisO, I am sorry your mother had this horrid disease, but she has been released and no longer suffering now. I hope your future will be happy and you can rest and regain your life and make it the way you want. Your insights are helpful-thanks for sharing them. And I'm glad I was able to help you on occasions. Take care and blessings to your dear mother. May she RIP.
MinutebyMinute
Posted: Sunday, December 22, 2019 9:31 PM
Joined: 6/11/2019
Posts: 393


I'm so sorry to hear this. REally appreciate the guidance you shared. Needed to see it after a particularly difficult week.

I'm trying very hard not to resent this sentence that both my mother and I are serving, with neither of us having committed a crime. SO relate to your words.

Thoughts and prayers are with you as you wrestle with any remaining demons, allow yourself to grieve and reclaim your life.


ninalu
Posted: Monday, December 23, 2019 6:58 AM
Joined: 12/22/2018
Posts: 63


Thank you, JanisO - your words are really helpful for me as I'm in the middle of my journey with my mother. I appreciate you taking the time to share your wisdom and I hope that you have many, many, MANY years of wellness and joy ahead of you!
SelEtPoivre
Posted: Wednesday, December 25, 2019 6:17 PM
Joined: 3/8/2018
Posts: 798


Janis, my condolences to you. Hoping time and love eases your sorrow

And especially about #4: I rage to my therapist about the people who have faded away from mom and me...and the anger I will feel if they show up at funeral boo-hooing. Where were they for the past 3+ years, when we both needed them?


S Kay
Posted: Wednesday, December 25, 2019 8:01 PM
Joined: 5/31/2019
Posts: 26


Janis

Sorry for all the struggles you had to endure over the past 5 years.  Your advice is priceless, so thank you for sharing.  Your mother has her peace now. Hopefully you can find the peace you deserve. Many blessing to you


ImInTheGarden
Posted: Thursday, December 26, 2019 7:08 AM
Joined: 10/31/2019
Posts: 46


I appreciate your advice.  Thank you.
MissHer
Posted: Thursday, December 26, 2019 1:35 PM
Joined: 11/13/2014
Posts: 2192


I'm so sorry for your loss and your right on all counts. My extended family and siblings did nothing except criticize me. They did show their true colors, though. All they cared about was her stuff. I really really miss my real mom but she , in her alz state, was very very hard difficult to take care of. I don't even care to go there anymore. It took me almost a year to recover from the stress. Have a wonderful life moving forward and you did a great job because you did it! 

God bless 


HITGIRL37
Posted: Saturday, December 28, 2019 4:07 PM
Joined: 10/21/2018
Posts: 6


Thank you for posting this. It's honest and true. I am feeling a lot of this now and I'm only going on two years of caregiving full time. I'm sorry for your loss, but am glad your LO is finally at peace and you can have your life back.
gubblebumm
Posted: Saturday, December 28, 2019 5:04 PM
Joined: 7/12/2017
Posts: 1400


BRANDY!  start a seperate post, you have many issues and one is save yourself and your kids, you are not a servent
smbren
Posted: Saturday, December 28, 2019 5:25 PM
Joined: 10/11/2018
Posts: 56


I am sorry for your loss.

 I want to say thank you for the post.  It is a great bit of advice.

I have been down this road for about 3 years now.  Suppose it started sooner, I just didn't really realize we were on this journey. 

I understand and can relate to all the points you mention.  There are problem dozens of threads on each.  Many I've probably commented on.

 Some of your words that caught me are the types of words I often say to my dad, my sister and brother, and to friends as I describe what is going on:
"DO REMEMBER that dementia is talking, not your LO. My other mom went away five years ago. "
I constantly remind people it's not her, not the person they know her to be.  That the disease is taking her away from us little by little.  And the ones that are most important to us are still there with us through this journey.  But as you said, there will be many other we will see at the end and wonder where have you been the last 5-7 years?

Again, so sorry for your loss.  And thank you for sharing your thoughts. 
 

 


Ainbinder
Posted: Saturday, December 28, 2019 10:14 PM
Joined: 5/2/2016
Posts: 47


Please try not to beat yourself up for being human!  Caregiving is one rough duty, whether we are doing it solo full-time or otherwise.  It is not always easy to remember, particularly when or if we are being verbally assaulted, that oftentimes it is the disease which is talking to us.

I was fortunate that my Mother was sweet-natured until the end, and that she and I had worked hard to have a gentle, honest and loving relationship long before the stroke/aphasia/dementia came into the picture.  I took care of Mom for 5+ years.  She is gone now a bit over a year.

I published a book on my/our adventure, titled "Just Before the Stroke of Seven" and it is on Amazon.  In it, I am brutally honest about what I did well and when I hit the wall, literally and figuratively.  If some stories and lessons from another solo full-time caregiver would ease your path a bit, I encourage you to read it.

This is rough duty, and yet the spiritual payoff can be beyond one's imagination.  But, as in other areas of life, first G-d gives us the test.  Then He gives us the lesson.  Keep the faith, and just do the best you can.  And if the abuse is beyond "reasonable" you do not have to subject yourself to it, if there are other arrangement possible.

Shalom,

Aaron


Ainbinder
Posted: Saturday, December 28, 2019 10:22 PM
Joined: 5/2/2016
Posts: 47


May your Mother's memory be for a blessing to you.  Our paths were similar - 5+ years solo for me, and my Mom died a year ago November.  Friends disappeared, reappeared at the funeral, and then disappeared once again.  So it goes.

Over time, and just recently, really, I have come to be able to view them and their absence in a different light.  A gentler light.  My resentment towards them was like my drinking poison and hoping it would hurt the other person.....but it has taken time for me to begin to soften up.

I wrote about my years of solo full-time caregiving.  If reading another's journey and perspective would be of help to you, or to any other caregiver, then I did my job by publishing it.  "Just Before the Stroke of Seven" is the title, and it is on Amazon.  I, too, found and bought several books on dementia and caregiving, but not one of them touched on how to do it if a caregiving team does not materialize.  Tried as I might, to put together a team, within a few months it became apparent that it was not to be. So, I kept writing in my daily journal, with the notion of publishing a solo full-time caregiver's tale.  I pray that it helps at least one other person.

Be gentle on yourself, Janice.  The world beats us all up quite enough.  I wish you peace, and I applaud you for seeing the duty through to the end.

Shalom,

Aaron


Sleepless Knight
Posted: Monday, January 20, 2020 9:57 AM
Joined: 7/7/2018
Posts: 41


moms lucky to have had you . God Bless and my sympathies,