1. < Caregivers: Dementia
Mentor

Introductions: Are you caring for someone with dementia?

Posted by Scott, Volunteer Mentor @IndianaScott, Aug 30, 2016

My mother-in-law (MIL) had what was finally determined to be frontal temporal dementia. She had the disease from her 60s until she passed away at 86. My wife was especially involved in her mom's caregiving due to some serious denial in other family members and a GP who refused to diagnose, even when significant deficits were obvious (mistaking the UPS deliveryman for her husband and not knowing the difference between roads and sidewalks). The most unfortunate result of this, to me, was the lost time when my MIL and her family could have been having meaningful and important discussions about significant matters of importance to her and them.

In my wife's years of fighting her brain cancer, she, too, exhibited many of the aspects of mental degradation and physical losses one would affiliate with a dementia patient.

As an aside, for several years I worked for the national Alzheimer's Association raising money for their research programs nationwide.

I wish everyone struggling with this disease and their caregivers and families strength and peace.

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Oct 21, 2017
In reply to @colleenyoung "@IndianaScott Thanks for starting this discussion on caring for someone who has dementia. I'm tagging fellow..." + (show)
@colleenyoung

@IndianaScott Thanks for starting this discussion on caring for someone who has dementia. I'm tagging fellow members to join us here too @tavi @lindabf @rozalia @sma1952 @clayton48 @19lin @caregiver49 @mmurray22dad @denver90 @nhunter121 @saltyfrog @coladyrev @shellsk24 @jhammer

Jump to this post

Hello @hutch, and thank you for jumping in to the caregiving for dementia sufferers conversation. By replying to the post you have joined the discussion. If you are replying by email notifications, I suggest clicking on VIEW & REPLY at the bottom of your email so you can always see the full discussion in the order of responses. Is there anything you would like to ask the group?

REPLY
edna317 | @edna317 | Oct 22, 2017
In reply to @colleenyoung "@IndianaScott Thanks for starting this discussion on caring for someone who has dementia. I'm tagging fellow..." + (show)
@colleenyoung

@IndianaScott Thanks for starting this discussion on caring for someone who has dementia. I'm tagging fellow members to join us here too @tavi @lindabf @rozalia @sma1952 @clayton48 @19lin @caregiver49 @mmurray22dad @denver90 @nhunter121 @saltyfrog @coladyrev @shellsk24 @jhammer

Jump to this post

"...already done the DPOA...". Please let it go until she pointedly asks about it. Have official documentation at hand for her to read.
If this disturbs her and causes an emotional upheaval, then lesson learned. Do not do THAT again. The episode will be soon forgotten, but the angst will remain. As you will find out, this is a journey of trials and lots of errors.
Then when you finally get it figured out , her condition will change and it's back to the drawing board.
A roller coaster ride like nothing anyone can imagine.

REPLY
Mentor
Scott, Volunteer Mentor | @IndianaScott | Oct 23, 2017
In reply to @meg4434 "My MIL age 78 has Alzheimer's and is in an assisted living home ( Alzheimer's side)...." + (show)
@meg4434

My MIL age 78 has Alzheimer's and is in an assisted living home ( Alzheimer's side). She has fallen several times and is now in a wheelchair.
She fell again this morning in the bathroom and is now in the ER.
My question (s) is ( are) :
Should her children look at seeing if the falls are from the disease or possible strokes?
What are other types of facilities are available as this disease progresses?
She does not get any physical or occupational therapy at this new place ( Arbor Terrace Morris Plains NJ), is that usual?
The facility suggested getting her an aide - are there specific nursing homes for Alzheimer's patients? How do I find them and secondly how do I know the level and quality of care that they offer?

I'm the daughter in law and my opinions don't always matter to my brother in law or sister in law even though I have friends who have gone through this with their parents. My husband does value what I say but his sister thinks she knows everything & she doesn't share pertinent information with my husband. My brother in law tries to but his position requires international travel quite often. My husbands sister lives in CT and we are 15 minutes from the assisted living facility. Very complicated to say the least. Any advice that I can share with my husband would greatly be appreciated.
Her strain of this disease seems very aggressive - moving quickly to say the least.
Thank you in advance for your advice and support.

Jump to this post

Hello @meg4434 I am Scott and it is nice to e-meet you here. I am glad you found Connect. Here you will find you are not alone in this journey.

Nursing home laws very by State and what each home offers in the way of services can vary greatly.

Sadly mobility can be a difficult factor in dementia patients. It frequently continues to degenerate as the disease continues. When it comes to PT-OT again, it will vary by facility, but rarly, in my experience, is it offered when a terminal disease is in the advanced stages. As to hiring an aide, that again will depend on the facility. I have seen some very costly ones which still require aides, and the have to be paid in addition to the facility cost.

I wish I had some insights into family dynamics when it comes to caregiving, but all I can say is 'speak up for the patient' and if possible encourage your husband to do likewise with his sister. You may also want to get HIPPA authorization so the facility can share care information directly with your husband at least.

Continued courage, strength, and peace!

REPLY
mojo1965 | @mojo1965 | Oct 23, 2017

Hi there,
After two years at home with caregivers, my mom and myself, my Dad is starting the final marathon. He has stopped eating and drinking anything but a few spoonfuls a day. He looks like he just can't coordinate his swallowing anymore and the doctor said he can't predict the timing of the end for him but that this doesn't appear to be just another temporary set back and we should be prepared and get organized. It's so awful. Since he lost all ability to communicate two years ago, we have been relying on hand signals and his eyes to get feedback. This has also stopped. When you lost you MIL from Alzheimer's @IndianaScott, did she just stop eating? How long did it take before the end came once the final decline started? Our entire family consists of my mom, my husband and teenage son so I need to be the strong one for my mom. Any info you could offer to help prepare would be greatly appreciated.
Thanks,
Monika

REPLY
9 replies
Mentor
Scott, Volunteer Mentor | @IndianaScott | Oct 23, 2017
In reply to @mojo1965 "Hi there, After two years at home with caregivers, my mom and myself, my Dad is..." + (show)
@mojo1965

Hi there,
After two years at home with caregivers, my mom and myself, my Dad is starting the final marathon. He has stopped eating and drinking anything but a few spoonfuls a day. He looks like he just can't coordinate his swallowing anymore and the doctor said he can't predict the timing of the end for him but that this doesn't appear to be just another temporary set back and we should be prepared and get organized. It's so awful. Since he lost all ability to communicate two years ago, we have been relying on hand signals and his eyes to get feedback. This has also stopped. When you lost you MIL from Alzheimer's @IndianaScott, did she just stop eating? How long did it take before the end came once the final decline started? Our entire family consists of my mom, my husband and teenage son so I need to be the strong one for my mom. Any info you could offer to help prepare would be greatly appreciated.
Thanks,
Monika

Jump to this post

Good morning @mojo1965 I am sorry to hear of this situation for you all.

End of life is a unique and personalized journey. It is not the same for any two of us. That said my MIL passed after only three days of no food. My wife after 56 days.

Sending all good thoughts to you all! Scott

REPLY
mojo1965 | @mojo1965 | Oct 23, 2017
In reply to @mojo1965 "Hi there, After two years at home with caregivers, my mom and myself, my Dad is..." + (show)
@mojo1965

Hi there,
After two years at home with caregivers, my mom and myself, my Dad is starting the final marathon. He has stopped eating and drinking anything but a few spoonfuls a day. He looks like he just can't coordinate his swallowing anymore and the doctor said he can't predict the timing of the end for him but that this doesn't appear to be just another temporary set back and we should be prepared and get organized. It's so awful. Since he lost all ability to communicate two years ago, we have been relying on hand signals and his eyes to get feedback. This has also stopped. When you lost you MIL from Alzheimer's @IndianaScott, did she just stop eating? How long did it take before the end came once the final decline started? Our entire family consists of my mom, my husband and teenage son so I need to be the strong one for my mom. Any info you could offer to help prepare would be greatly appreciated.
Thanks,
Monika

Jump to this post

Thank you Scott for your quick reply. 56 days for your wife?? I'm sure that experience is horrific...nobody should have to endure that-on both sides.
I guess the "need to know" freak in me has to accept that this is an unknown. Hard to stand by and feel helpless...
Thanks again,
Monika

REPLY
GinAll | @ginall | Oct 23, 2017
In reply to @mojo1965 "Hi there, After two years at home with caregivers, my mom and myself, my Dad is..." + (show)
@mojo1965

Hi there,
After two years at home with caregivers, my mom and myself, my Dad is starting the final marathon. He has stopped eating and drinking anything but a few spoonfuls a day. He looks like he just can't coordinate his swallowing anymore and the doctor said he can't predict the timing of the end for him but that this doesn't appear to be just another temporary set back and we should be prepared and get organized. It's so awful. Since he lost all ability to communicate two years ago, we have been relying on hand signals and his eyes to get feedback. This has also stopped. When you lost you MIL from Alzheimer's @IndianaScott, did she just stop eating? How long did it take before the end came once the final decline started? Our entire family consists of my mom, my husband and teenage son so I need to be the strong one for my mom. Any info you could offer to help prepare would be greatly appreciated.
Thanks,
Monika

Jump to this post

Hi, I am new to the group, but with past experiences, I would talk with a Hospice in your adea. They are an awesome group and will help you through this season of Alzheimer's. I am a care giver for my husband who is in the moderate stages, so we are going through repeated questions, not driving, and afraid to leave my side.

REPLY
Kdawn | @kdawn32 | Oct 23, 2017
In reply to @ksdrwelch "Has anyone in this grouped experienced a family member having vascular dementia?" + (show)
@ksdrwelch

Has anyone in this grouped experienced a family member having vascular dementia?

Jump to this post

Yes. My Mom has vascular dementia. She is into year 14. She does not have Alzheimer's but the differences are subtle. Her mother had it as well. You'll see @harriethodgson1 reply below, take out the "added up to Alzheimer's" and I could have written the exact same thing. My guess is in that case it is just the doctor trying to better explain it. How can we help @ksdrwelch? You are not losing your mind or getting dementia right now either. Even if it feels that way at times. FYI stress can cause some of the same symptoms. 🙂 Ask away.

REPLY
Kdawn | @kdawn32 | Oct 23, 2017
In reply to @mojo1965 "Hi there, After two years at home with caregivers, my mom and myself, my Dad is..." + (show)
@mojo1965

Hi there,
After two years at home with caregivers, my mom and myself, my Dad is starting the final marathon. He has stopped eating and drinking anything but a few spoonfuls a day. He looks like he just can't coordinate his swallowing anymore and the doctor said he can't predict the timing of the end for him but that this doesn't appear to be just another temporary set back and we should be prepared and get organized. It's so awful. Since he lost all ability to communicate two years ago, we have been relying on hand signals and his eyes to get feedback. This has also stopped. When you lost you MIL from Alzheimer's @IndianaScott, did she just stop eating? How long did it take before the end came once the final decline started? Our entire family consists of my mom, my husband and teenage son so I need to be the strong one for my mom. Any info you could offer to help prepare would be greatly appreciated.
Thanks,
Monika

Jump to this post

Monika, I'm so sorry you are going through this right now. It is never easy losing you Dad even when you know the end is near. It will still feel like a punch in gut. A year ago tomorrow my Dad past away. He did not have any type of dementia but he and I took care of my mom together for years. Eventually siblings started helping. One still does. But back to the end of life questions regarding your Dad. IndianaScott is right on in the fact each person is unique in this. I would say don't be surprised if he rallies. Your family will start thinking "wait he is getting better". It is common for people to have a sudden burst, a last fight so to speak. Don't let it devastate you when it suddenly turns back. Instead enjoy those few precious moments. Being the strong one. Yeap for your Mom you do. That means you're going to have to ask your husband and son to step up for you. They will. You will all soon crave normalcy. Whatever that new normal is to be. Soon after you all find it take some time to not be the strong one even for you Mom. Once it's safe go cry or yell or whatever even if it on your husbands shoulders or your Mom. Grief is different for each of us. Let it be what it is for you. My thoughts and prayers are with you and your family.

REPLY
Kdawn | @kdawn32 | Oct 23, 2017
In reply to @colleenyoung "@IndianaScott Thanks for starting this discussion on caring for someone who has dementia. I'm tagging fellow..." + (show)
@colleenyoung

@IndianaScott Thanks for starting this discussion on caring for someone who has dementia. I'm tagging fellow members to join us here too @tavi @lindabf @rozalia @sma1952 @clayton48 @19lin @caregiver49 @mmurray22dad @denver90 @nhunter121 @saltyfrog @coladyrev @shellsk24 @jhammer

Jump to this post

Candace, I don't know if it will work for your mom and if it does work it won't last forever, but try making some signs with the answers to those questions. Put them in a place she can see (assuming she can still read). For example "Breakfast is at 8AM. An aide will be there to get you between 7:30-8AM"'. It may help for a while. It did with my mom. Eventually it stopped but even temporary relief is wonderful.
Best wishes, K

REPLY
View MoreView Less
Please sign in or register to post a reply.