View Full Version : Update from Mary - what's been going on with moi

11-04-2014, 10:46 AM
So here’s what’s been going on in my life recently, that has rather disrupted my Blab participation …

A lot has happened in the last several months! The short version – as a result of a combination of a medical emergency, increasing concerns about my aging parents and that I already work from home, over the winter I moved into my parents’ home to care for them in their last years. They are in their 80’s. My mother has late-stages Alzheimer’s that progressed very quickly from the time it first showed a heavy impact, only about 18 months ago.

This is not a “sad” post in the same way as some of the situations that members have shared on Blab. This is about a natural end-of-life process. The family goal for my mother is to make her as comfortable, safe and cared for as possible, and offer her all the quality of life she can have. She doesn’t miss the things she doesn’t remember. If the parents can progress through the final stages of aging comfortably and naturally, in their home, that’s a good thing. :)

Yes, Ranger the black lab and Phil the horse moved with me. Ranger is a treasured family member who enjoys puttering with my dad and offering my mother a comforting presence, and sharing cheerful outlook on life with everyone. Phil is in a good local board barn where we are both taking advantage of a highly-accomplished dressage instructor. A lucky find!

The goal is to keep both parents at home for as long as is possible – to the end of life, if it can be done. This is what they want, what I want and the family wants. We have a lot of emotional and practical support from both of my siblings, although they live a few hour’s drive from here so can’t drop by. I also have a caretaker who comes in for a few hours several times a week. (Otherwise nothing at all would get done in my other work or on Blab!) Going forward, I will get whatever help is needed in the home. My parents saved for this plan.

For those who wondered what on earth became of the annual Blab summer photo show and birthday celebration – ‘overwhelmed by events’, is what happened. Even with help from Blab, it was impossible to do everything that needed to be done as I couldn’t stay engaged enough to coordinate it all. And it was a major roadblock that our gallery software has some bugs. Not enough time to get those fixed while taking care of this home stuff as well. The summer Blab events WILL return, though – just a miss-year due to major unexpected changes!

Recently my mom ended up in the ambulance to the hospital for the second time in the last five months. Both were fainting spells (not full faint but close). Recovery this time is slow and wasn’t always that smooth. Unfortunately I didn’t always get online to Blab. Don’t know if she will return to the same condition as before the faint, or if there will be a permanent step down. Extra help will be brought in as needed. We are not doing any dramatic medical interventions such as surgeries. She would not understand what was happening and her distress and discomfort would outweigh any benefit, with a limited expected life span.

So that’s what’s going on, indefinitely at this point. I expect I’ll be throwing a few questions from this experience out to Blab for your opinions and knowledge. It’s an interesting journey, to say the least.

Blab is a top priority and will continue to progress. In fact, I plan to put even more time into Blab than in the last few years. Look for some easier-to-navigate mobile options soon! And some other good stuff planned …. It’s moving forward! :hubba

Thanks for all the well-wishes. Really, this is not a sad situation. It’s more like the things someone does to raise children. Many other people on Blab have far more serious family situations to deal with, and my heart goes out to them. And I tell myself that no matter what is going on, it’s easier than raising children! :)

11-04-2014, 10:57 AM
Best to you and yours, Mary.

11-04-2014, 11:01 AM
:hugg Thank you for sharing. Life situations like this require immediate attention because there is no other time to deal with it. I'm glad you're so involved with you Mom and Dad and looking out for their best interests.

11-04-2014, 11:12 AM
:hugg It's a very loving thing you have done to move in and care for your parents and keep them at home. I'm sure there are many difficult days, but you'll always know that you made it possible for your parents to be comfortable at home. I applaud what you are doing! Sending thoughts and prayers for you and your parents.

11-04-2014, 11:29 AM
Mary, bless your heart for moving in with your parents. My mom is going through the same thing with her parents (my grandparents) right now. The way you describe your mom sounds so much like my grandma right now. She's been medically tested to see if she has the dementia, or alzheimers because she gets so easily confused, but they keep telling us that's not the case. There have been instances where I go over there to visit her though, and she'll have her moments where she thinks I am someone else. She has fallen multiple times in her home, and now her children have hired assisted living to come in to do mornings. It's a real frustrating situation right now, because they also want to stay in their home. My grandpa thinks that he can take care of grandma but half the time he doesn't pay any attention to her, and he's calling my mom steady about the stupidest things, like there's debree on the sidewalk or his fence might not get painted before winter... He and my grandma have both made comments about killing themselves to save their children the trouble. They are about as stubborn as you can get. My mom has about a 30 minute drive daily to go over to their house to check up on them. My mom's sister lives next door to them, and gets paid to help take care of them, but cries to my mother that she's got her hands so full she can't put in the time that my mom can. It's been so frustrating to watch. I understand the love for a parent because I will likely do the same for my own someday, but my mother is run ragged. She has hardly had any time for her own home, family, nothing and every time she does try to leave her phone line is blowing up just steady. My mom has one of those very caring hearts/demeanor and she can make anybody feel better. My aunt on the other hand gets really ornery with them, so they naturally want my mom, but my aunt is the one getting paid. It's coming down to the point where a decision needs to be made, much like what you did. My mother told me "life comes full circle..." she said you start out in the world helpless and end your life virtually helpless. It may be the natural way of things, but I do think it is sad. It's hard to watch the people you love become so helpless and forget who you are. The part that doesn't make it sad, is the love that you give and receive in the process.

11-04-2014, 11:30 AM
Wonderful for your parents that you are prepared and willing to take care of them. If you haven't already, please do read up on hospices in your area. They are better able to offer support to both your parents and yourself than the average caretaker agency. I work for a hospice myself, and the hospice took care of both my grandparents. Even with my aunt being a nurse, I don't know if we would have been able to do everything for them at home without the support.

God bless you and your family.

11-04-2014, 03:24 PM
Thanks so much for all of the kind thoughts! :adore

.... My grandpa thinks that he can take care of grandma but half the time he doesn't pay any attention to her, and he's calling my mom steady about the stupidest things, ....

I could write an essay on this one, and at some point I may. Knowing what I've learned, I find it terrifying that two elderly people, one or both with health issues, are trying to make it on their own. And family visits don't discover true conditions because they put the best face on it when visitors are there. Aside from the physical challenges are the poor judgments and the faulty expectations of one another, just as you describe.
:gaah :cry

My parents had discussed/proposed me moving in a year before I did - then backed away from the idea. But that is what should have happened. My dad did his best for that year, but he was never a competent caretaker for my mom as she progressed rapidly through the stages of Alzheimer's. And trying to do everything himself pulled him down as well. (Same thing happened with an uncle/aunt, they now have a lot of outside help coming in.) I was driving an 8 hour round trip every 3 weeks last year and staying a couple of nights each time, to help keep an eye out and keep things under control. But it wasn't until just after last Christmas when my mom's condition became so bad she was hospitalized and then transferred to a nursing home for 2 weeks. Then he finally agreed to my moving in. By then my mom was no longer making any decisions. But with some basic cleanliness, better diet, a daily schedule and some common sense, things did improve.

11-04-2014, 03:39 PM

11-04-2014, 03:43 PM
Hugs to you, Mary. :hugg

You did a bold and courageous thing by taking on the responsibility of your aging parents. We battled Alzheimer's with my mother for more than 8 years. It was slower progression for her, and her good physical health made it even more difficult because she had to be supervised all the time (or she would just wander off). She spent the last 4 years in an Alzheimer's memory care facility, which was very expensive, but gave her excellent care. When she entered the later stages of the disease, she stopped eating, and went into the hospital. She was sent into the Hospice unit, where she passed peacefully just a few weeks ago (Oct. 5th). It is a relief in many ways, since she had no 'life' anymore, and only depressed me greatly. But of course, I miss her very much.

Hang in there. It is very difficult to deal with aging parents, and especially dementia/Alzheimer's. Try to read as much as you can, so you know what to expect as far as the behavioral changes that will occur with the progression of the disease.

11-04-2014, 03:45 PM

11-04-2014, 03:46 PM
Big Hugs, Mary. I'm in the same boat...moved home, dad slowly dying of cancer, mom only partially able to help and with her own issues. Goal...help dad die comfortably at home and keep mom in her beloved home for as long as possible. If you ever need to vent, I'm there. As the saying goes...I own the Tshirt! Hang in there.

11-04-2014, 04:53 PM
I've been there, Mary, with my maternal Grandparents over the last 8 years or so. My Grandfather got dementia (not Alzheimer's) and didn't know who you were or what he was trying to talk about most of the time. He passed away a few years ago, and my Grandmother ended up having a stroke that ultimately led to her death. Two years ago this coming March. They died about a year or so apart. They wanted to stay in their own home, and we brought in sitters to watch and help them. We live in another state, but my parents visited them every other weekend, and their son lived in the same town and kept an eye on things. We just got the house/property cleaned out and leased/sold. It's really rough. Best to you and your family during this stage of life.

11-04-2014, 07:55 PM
I watched my mom go through the same thing with her grandparents. I also second the recommendation to look into hospice care - it's as helpful for the relatives as it is for the patient.

11-04-2014, 08:09 PM
:hugg :hugg

11-04-2014, 08:26 PM
Major :hugg to you, Mary. It's wonderful that you've moved in with your parents to help them out and keep them jn the comforts of their own home for as long as possible. When my dad died 4 years ago my brother and I insisted our mom move in with us. She's fully capable of takingcare of herself, but my parents lived in the mountains, 90 miles from us and I just didnt feel comfortable lettng her stay there by herself. She's 79 now and while her medical issues are minor, we have no way of knowing how long that will remain true.

Good luck to you and remember, we are all here for you.

11-04-2014, 09:54 PM
Thanks for sharing :hugg

11-04-2014, 09:57 PM
Best of luck to you, Mary, as this situation unfolds over time. We're all thinking about you and your family! :hugg :hugg :hugg

11-04-2014, 10:00 PM
Thanks all, it is wonderful that the people of Blab are here for each other. :hugg

In a way it's kind of a blessing that Alzheimer's didn't really affect my Mom much until she was 81. If it's been fast since then, on the other hand, she had far more good years than her mother had. My maternal grandmother suffered from it for I think it was 5 years while in her 70's. She was in slow deterioration while still at home for 2-3 years before that. Less was known back in those days, and it wasn't good in any way. My mom is having a much, much better journey and is at least relatively at peace.

Medicare provides some great services that have helped so much, but if the nurse in her PCP's office hadn't told us I would not have known.

Hospice is a great discussion to have - sounds like there is a lot of experience with it here on Blab. We are not yet ready for hospice, but it is definitely available when the time comes. I've spoken with a couple of providers here locally.

11-04-2014, 10:36 PM

11-04-2014, 11:17 PM
:hugg :hugg

11-05-2014, 07:55 AM
Hospice doesn't come into play until the doctor feels that the patient has less than 6 months to live.

The devastating part of Alzheimer's is that the afflicted person can live for many years, in good physical health, as their memory and cognitive abilities decline. My mother was diagnosed with dementia in 2005, and we tried all kinds of meds and therapies. In 2007, after my father died, we had to move her into an assisted living facility, and in 2009, her cognition declined so much, she could no longer dress, bathe, or use the bathroom, by herself. We had to move her to the Alzheimer's memory care facility, where she would receive 24/7 supervision. She didn't enter the 'final' stages of Alzheimer's until a few months ago, and when she stopped eating (at the end of Sept), the doctor put her into the Hospice unit at the hospital. She was there for 2 1/2 weeks before she passed....just a few weeks ago. :cry

The folks who work in the Hospice care places are wonderful. They are no longer under the 'thumb' of a doctor who would dictate what they can, and cannot do. Their job is to just keep their patients comfortable, and console family members. They are very special and caring people.

Shelf Elf
11-05-2014, 09:56 AM
:hugg Hug to you. Be sure to take of yourself too. Carecarvers have resources too. I have been in similar situation. My father, 8 year survivor of esophageal Cancer passed away from a brain tumor in 2008, my mother took care all the way thru cancer but when tumor was diagnosed in January (wont go into hair raising drive new years eve at 10 pm 3 hour drive). Hospice was assigned, thought 6 months, he passed away 16 days later at home, just like he wanted. I am only one in state, so i would drive back and forth. Now my mother moved closer to us. Long story short, please take of yourself, i am still paying the price for negligence on my part about my health. Hugs again.

11-05-2014, 01:27 PM
Best of luck to you, Mary, as this situation unfolds over time. We're all thinking about you and your family! :hugg :hugg :hugg
Absolutely, this!

And I also agree with Shelf Elf. Mary, you must also remember to take care of yourself.
As a caregiver you will sometimes find it hard to remember that YOU need time for you as well.
It's wonderful that you are there for your parents, don't forget to be there for yourself, too.
Many :hugg 's

11-05-2014, 01:41 PM
Absolutely, this!

And I also agree with Shelf Elf. Mary, you must also remember to take care of yourself.
As a caregiver you will sometimes find it hard to remember that YOU need time for you as well.
It's wonderful that you are there for your parents, don't forget to be there for yourself, too.
Many :hugg 's


Yes, yes! While it's great that you are helping with your parents' care, please don't forget to take care of yourself! It's easy to get caught up in doing what you feel is best for them, but you don't want to neglect yourself.

11-05-2014, 01:41 PM
My grandparents moved in with my Mom and Dad during the latter months of my Grandmother's life. She had dementia, and my Mom pretty much was her sole caretaker. (Grandma started believing Grandpa was "the devil" and she would only let my Mom take care of her. My Grandpa was a sweetheart, it was Grandma's dementia that caused her outbreaks.) We (the grandkids) would come in to help as much as possible, but Mom felt responsible. My Mom had already been diagnosed with cancer before the caretaking, so it wasn't a surprise but...

Grandma died in November. We lost my Mom 8 months later.

So, I echo what others are telling you, Mary: please take care of yourself as well.

Oh, and hospice workers? Angels, I tell you... freaking angels.

01-09-2015, 02:38 PM
Thought I would give a quick update ... my mother is now on hospice care. We enrolled her not long after I posted this thread. I so appreciate the advice and encouragement y'all have offered. The hospice people have indeed been wonderful. And it is a relief to know we have their phone number rather than 911, and hopefully she will not be back to the ER or the hospital again.

I learned I had a lot of misconceptions about hospice. When I mentioned this the "counselor" said "yes, you are in a large boat on that!". :)

One thing I learned is that you are "allowed" to live far longer than 6 months once enrolled in hospice. Although your prognosis might loosely be for 6 months, it's common for people to live much longer and remain on hospice, even for years. I knew my mother was likely to live much longer unless some illness such as pneumonia developed, and her care makes that unlikely. But her current condition qualifies her for hospice.

Since I posted, my mother has stopped walking or standing. She can't stand even enough to transfer from the bed to a chair. Doesn't sit in a wheelchair because her spine is stiff and doesn't bend enough at the hips (scoliosis has become severe over the last year). She moves very little without a lot of encouragement, and not much then. She sleeps much of the time. But she is alert for part of every day and is still somewhat responsive and conversant, in a limited way.

We have a great, innovative "chair" that can fold out flat like a gurney. We can slide her from bed to chair when it is flat, and she can sit in the chair. It's similar to a "jerry chair" but much better for in-home use. Without this chair she would be bed-bound, but she can be up on a regular schedule with it. I recommend this for anyone doing what we are doing - Medicare provided it. Link - looks complicated in the picture, much better in person! (http://www.shoprider.com/category/patient-transfer-system/human-care-h-250.php)

As has been mentioned by several of you, her basic health and vitals are consistently good. Our primary caretaker, who has 14 years experience caring for aging people, expresses it simply as "she's not sick". The caretaker sees people in my mom's condition live for a long time. Although Alzheimer's can eventually lead to someone's death, usually they die long before then of a complication due to the inactivity or other causes.

In fact, many decades ago when lifespans were shorter, I don't think my mother would have lived long enough to be in her current Alzheimer's condition (although it may also have onset sooner).

Read something that said that "Alzheimer's is the coming storm" for our society. Baby boomers living far longer, and many of them will be living for a long time with Alzheimer's. It is certainly a very high-maintenance condition.

01-09-2015, 03:27 PM
:huggs Mary

01-09-2015, 03:40 PM
:hugg :hugg

01-09-2015, 03:41 PM

01-09-2015, 04:38 PM

01-09-2015, 05:54 PM

01-09-2015, 08:24 PM

01-09-2015, 08:39 PM
Big hugs to you, Mary. As an occupational therapist who works in a hospital, I often see patients and their families considering this choice. It's hard enough to think about, let alone, make this decision knowing the end result. We did this for my great uncle who also had Alzheimer's type dementia and I again with comfort care for my dad following a massive stroke. It's tough but meant to give the individual the dignity they deserve while not prolonging the enevitable to the point where the individual suffers. My thoughts and prayers are with you and your family. :hugg

01-09-2015, 10:55 PM
Thanks all, you are a wonderful support group. Hugs back!

01-10-2015, 05:07 PM
Best wishes, Mary. Just having you there is bound to steady them and help spell your dad.

We're having a challenge with my mom's third hip surgery coming out of joint due to the angle her pelvis is torqued... at 82 and frail they don't want to keep doing surgery, so she's in rehab learning to work with it as is (slower, with non-rolling walker). A bit of luck is the apartment on the first floor (bet. nurses and dining room) that became available, as she has to be able to get around herself without a wheelchair at assisted living, and contribute to her own evacuation in an emergency. Her memory is variable but she seems to do pretty well in her familiar apt. full of the contents of her home, and in a familiar routine.

01-10-2015, 06:03 PM
Wow, I know the hip surgery is a big challenge. It's especially tough when specific physical issues are on top of general progress of aging.

It used to be there weren't many people in their 80's. Now a lot of people live to their 80's and even 90's, and some are in fairly good shape. My dad is 85 and quite vigorous, cutting his own firewood and maintaining the lawn. He did various projects around the house to add grab bars as my mom needed them. He allowed as how he might also need them at some point. :) One of my biggest challenges is keeping him busy, because he's one that will find something to do and that can be a whole other story. :grintongue