Caregiving Thread: Sources, Answers and Support

Yes, I think that random, unannounced visits are the best bet!  And if there are any other people who can visit, that could help also.  Does MIL qualify for hospice?  Not that I'm suggesting this for "final days" support, but I learned with my mom that dementia is a qualifier, even without a specific prediction on remaining lifespan.  The difference for my mother was that she was already IN hospice due to an acute illness that she ultimately survived (and lived for another year or two afterward.)  When we discussed ending the hospice care after that particular illness, I learned that we didn't need to do so and we were able to keep it in place.  Among other things, there was a nurse and social worker who made routine visits at intervals.  All of that was covered by Medicare and it was a VERY positive thing.  BUT ... I don't know if/how that works if the patient isn't already enrolled in hospice.

That's an interesting thought, SAC. When Mom entered a hospice situation, I noticed the level of care went up exponentially. I don't know if it's because the facility was that much better than where she had been before, or if the ratio of patients to caregivers was better, or if the staff who work in hospice are trained differently or simply have different personalities. What I do know is I was struck the day she arrived by how caring and concerned and attentive the nurses and aides were. I'm so glad she spent that last week in that environment.

I got a "prescription" for a hospice interview about a year ago.  I never followed through with it though. It was mostly for the benefit my husband and his siblings.  I feel like I have a pretty good idea of the signs that indicate when the end of life is more near - he seems unable to see the inevitable and always wants to make Herculean efforts to fix things - my MIL's health included.

Perhaps I should look at the benefits of Hospice once again.  My MIL does have aides from two agencies and they seem to provide a nice set of checks and balances on one another.  Each agency sends a nurse supervisor once a month as well to do independent assessments.  Lots of eyes on my MIL, nothing will go unnoticed at least.

My mother received hospice services without moving to a new facility.  They came to her in her assisted living apartment (and would have come to her at home if she still lived there.)

Oh, my goodness - this is alarming reading! A report on falls and home safety.

http://www.nlm.nih.gov/medlineplus/news/fullstory_152427.html

There was a positive ageing story on the BBC World news site this morning, about a working nurse celebrating her 90th birthday at work. Did you see it?

I found this NY Times article very touching: 

http://tinyurl.com/nlxfgy2

I had breakfast with my dad today. We walked from his store where he was working to a neighborhood breakfast place owned by one of his previous employees. My father had not been there in a year because he was unable to walk the one block to her restaurant. It was a happy morning. And I am so pleased for him and for us. My father was hospitalized several times, and he has struggled to figure out what was wrong. In the end there was a determination that perhaps it was a little of everything, and he was treated for four different issues. But promising improvements were not enabling him to carry on with his life. They took him off cholesterol meds and he was full of energy, and muscle pain was gone. For two days. Still not well enough to go to his grocery store. 

After all of these previous, extraordinary tests and treatments, a blood test helped determine that he had polymyalgia. He is taking prednisone and has been working at his store ever since. He goes to exercise class to building up his strength, and he hasn't looked or felt this good in 2 years. 

Wanted to share my good news, since you guys are always quick to be supportive when the news is scary.

What a wonderful update! So happy for your father and for you, too.

What are the benefits of hospice care please? And @SAC, where did you learn that dementia is a qualifier? I suspect it could prevent one's end-of-life from getting over-medicalized, right? 

I read Atul Gawande's Being Mortal recently, holy moley what a thought-provoking, thoughtful book. If you're in a good mood. Might be helpful to caregivers. 

Lisat, what a good outcome! (All things considered) you may also want to discuss minerals or mineral salts with your dad's doctor (one of my staff has polymialgia and has just had his meds totally reworked). 

KMK, I couldn't get that link to work.

Hospice Care:  hospice is often thought to be the very last stop before death. It's the lobby and the waiting room, complete with ushers and porters. Except - it's not! It's caring, compassionate, focused, customised, flexible and personal. It's meant to be consumer-directed with lots of protection for that in the care plan.

That said, the others can tell you more about the options you can find closer to home than the ones I know.

addiemoose said:

@SAC, where did you learn that dementia is a qualifier? I suspect it could prevent one's end-of-life from getting over-medicalized, right? 

This was based on my mother's experience and I'm not absolutely sure that it is a qualifier for initiation of hospice.  In her case, she had a serious acute illness which was the initiator for her entry into hospice.  She recovered from that crisis but they told us that, because of her dementia, it could be continued and we elected to do that.  She lived for a year or two after that. (I no longer remember the dates of that illness.)  I believe that Medicare paid the entire cost of that hospice care throughout that 1-2 year period until her death.

So, on that basis, I certainly think it is worth inquiring for dementia patients in other circumstances, but I cannot point you to a definitive source.

Often with dementia patients ,  loss of weight over a period of time signals what is "failure to thrive" which is along with the dementia itself a qualification for hospice care.  That was how my stepdad was placed in hospice care which paid for things like a special bed and wheelchair, incontinence supplies and when he developed pneumonia he had round the clock nursing care all paid for by hospice(Medicare) at his assisted living facility .

Before the new MOL, there was talk of starting a category for and about seniors. Caregiver information could be more easily found in one place, rather than in separate threads which often get "lost". Jamie said it was on his to do list after the changeover was complete.

This category, when it becomes a reality, should offer senior citizens a place to communicate with one another about life in the golden years, sharing experiences, needs, and feelings, etc. I see it as a senior virtual community. Caregivers should  better understand their own family members by "listening" to elder chat.

http://www.nytimes.com/2015/05/14/business/retirementspecial/turning-to-social-media-in-times-of-need.html?ref=todayspaper

LisaT, that is wonderful news about your father. I hope he continues to do well for a VERY long time!

Regarding hospice, my experience was limited, but I was deeply grateful for the level of attention and care Mom was getting for the last week of her life. I felt as if the nurses and aides in hospice were much more careful with her and more observant of what was going on.

I like the idea of having a "senior center" on MOL.

LisaT, that is wonderful news about your father. I hope he continues to do well for a VERY long time!

Regarding hospice, my experience was limited, but I was deeply grateful for the level of attention and care Mom was getting for the last week of her life. I felt as if the nurses and aides in hospice were much more careful with her and more observant of what was going on.

I like the idea of having a "senior center" on MOL.

Sigh.

Today is FIL's birthday, he's 88. He'd be thrilled, if he could express anything for more than a minute these days, or even know which day it is. And, yes, he's still home, still mostly isolated.

BIL-J hasn't made any plans that have been communicated us. We have no idea what holds any meaning for FIL any more, and receive no communication re health or welfare etc. So gift buying is a challenge. I'm hoping warm pjs will be OK, guessing at size.

My MIL was unusually agitated last week. When my husband called to say that he was on his way over to see her she said (for the first time) that she would be unable to meet him because she had a train to catch.

When pressed she said she was going "home." When my husband arrived they discussed the "trip" and he asked which of their 12 previous homes was she traveling to. She was confused on the details but said that she was going to the one where Mr.K (her late husband) was waiting.

The mother/son visit was lovely and the train trip was not mentioned again.

It was only when my husband got home that he realized that the day was the anniversary of his father's death 6 years ago. It is truly remarkable that my MIL remembered the date or it is truly eerie that she was thinking of him that day for the first time in years.

Wow. That's astonishing, the way memory and word associations can construct a meaningful reality where it's hard to find current context.

(I'm having difficulty expressing myself today: I'm overly wordy, and missing the point of much of what I'm trying to say)

It's nice that your MIL and your husband had a good visit, and it also relieved any underlying distress she may have had. also it's nice to know why things crop up when they do.

We rang FIL, and sang. He said he remembered it was his birthday, he sounded happy. We were probably the first to say anything; I forgot BIL-J 'doesn't believe in birthdays'. FIL's talking about 'tests', but we think he just means the carers who assist with morning grooming, exercises, etc. he really can't find his words any more.

I have been dealing with a sick parent for the last 8 days. Just a few weeks ago my vibrant 80 year old dad flew from his home in Dallas up to Iowa for a class reunion, drove 100 miles to visit friends and flew home. He was supposed to fly to NJ with my mom to meet me but he developed a fever. When he was stuck with profound weakness Mom took him to the emergency room and they diagnosed pneumonia. He had no cough, nothing.

The antibiotic they prescribed did not work and 10 days later he was readmitted to the hospital. Within hours he was upgraded to Progressive Care and finally transferred to the ICU. My dad voluntarily allowed the hospital to sedate him and put him on a ventilator so that he could heal. I arrived the morning after, leaving my 18 year old and my 15 year old alone to care for themselves for a total of 7 days.

Pretty tough all around. After I arrived, the hospital would lift his sedation for at least an hour a day. When it happened his bright blue eyes were just searching the room and he was in disbelief that I - his daughter from NJ - was standing in front of him in addition to his hermit son (my brother) from Arizona. I stood by with all 3 of my brothers and my mom and we kept vigil knowing that these could be his last days. We used the Alphabet board and he could SLOWLY point out letters and form words to ask questions. Thankfully, he slowly got better (according to the test results.)

Finally the doctor's took out the vent. A day later they took out the nose feeding tube. Dad is feeling better but weak. I left Texas yesterday with the knowledge that he will be transferred to an in-patient rehab facility soon.

Given my past rehab experience with my MIL it was not surprise today when I learned my father has slipped into a spell of delirium. Without going into the TMI details my little brother was at a loss with my father's behavior this morning.

I am treading a path between so many worlds right now. Here I am, age 54 and I am torn between my teen children, my parents and the house guests I am expecting to visit in just a few days.

It is weeks like these that remind me how important it is not to obsess over the "minutiae" in life!

OMG. Now I understand more about what you are dreading beyond the visit from your SIL. I am so sorry... I know what the distress over parents feels like only too well, although I was not "sandwiched" between parents and teenaged children.

I do think you should have no hesitation about shutting down SIL when she starts on the litany of woe. I wouldn't even bother being terribly polite about it at this point.

Wishing you strength and peace, and hoping for a better recovery for your father. The first time my mother slipped into "sundowning" delirium, she was in the hospital following the terrible fall she took 2.5 years ago. I will never forget the shock. There is something about hospital environments that disorient people so badly they just can't make sense of their surroundings, even if they were making perfect sense the day before.

No particular advice, but sending PVs your way kmk. BTDT and got through it and you will too.

I so miss the emoticon for hugs----here's a big hug for you. Hang in there.

Oh my, kmk! That was just awful. My dad was diagnosed with pneumonia without any coughing too. Prayers for a good recovery for your dad and peace to you and yours.

I really came to rely on those emoticons to speak for me {{{virtual hugs}}}

KMK, so sorry you and your family are going through this, sending prayers and good vibes to your dad in Texas.So difficult when family is far away, such stress. Your plate is full, keep on keepin' on.

Ditto what others are saying about the emoticons. Some things just work better in images.

But for now: {{hugs}}

Thank you all!

Many hugs, kmk. I hope your father improves and that you are able to get some relaxation in at your beach vacation. I left my mother in the hospital last august to meet my family half way through a vacation on the Outerbanks. Very hard to relax, but when the ocean soothed my soul. I hope it does the same for you!

No words, just PVs flowing from here to you, since I first read about this after work yesterday.

Xxxxxxxxxxx

It is 7:45PM and I am holding a cocktail even though I still have dirt under my nails.

Working in the community garden tending to my vegetables, picking green beans, chili peppers and cucumbers is very good therapy. I waited until the sun started to set and went over at 6:30PM.

Wouldn't you know that this was "my week" to weed and water the communal flower plots. Thankfully it rained this week and they did not suffer while I was away. I have my own double-wide plot divided into 3' squares. I am so happy to "compartmentalize" and focus all my energy weeding one square at a time. I get the feeling of accomplishment even though just a few feet away the arugla has bolted and the basil is blossoming!

As some of you may know, my dad did not survive his illness. I was in Texas at his bedside with my mother and siblings when he died. It was a very moving experience.

I now feel VERY strongly that everyone should know (and witness) the stages of death. The process is surprisingly very much like the stages of childbirth. You never know exactly when a human soul will enter or leave this world. Just as women have taken control of their bodies and their childbirth experience, we should all plan our own death experiences. The sanitized end of life scenarios put forth by some hospitals and funeral homes are as removed from our natural selves as was women giving birth while unconscious in the 1950's.

My dad even thought he was fully in control of his death experience. He was told that he would only live a few hours if he took of his oxygen mask. With much effort he purposely took off his mask and asked it to be kept off. He then took a nap. 12 hours later he woke up, looked at the clock, smiled, shook his head, threw his hands up in disbelief and literally said "What the hell?!" before going back to sleep. This happened on and off for almost two days.

Of course our needs and wishes will change with different stages in our lives but our BASIC values and wishes can be recorded today for family members to refer to. I was given the link to MyDirectives.com while at the hospital. I have already begun making a list of my preferences.

I was surprised by certain behaviors of my family members through this process. I know everyone grieves in their own way but eating a 5 Guys Hamburger (fully loaded) and fries at the dying man's bedside?! My directives will be very personal but - for the love of God - they will include the request to keep smelly food out of my hospital room (or bedroom)! I will not be in charge of everything at the end of my life but I know a few things that would irritate me and others that would make me very happy.

This is a great time to be "mindful" about what matters most and to plan accordingly.