Caregiving Thread: Sources, Answers and Support

I had the same thought as lizziecat and joanne but hesitated to mention it because if I remember right, money is tight for your family currently. But if you can find a way, I'm sure that once the help comes, you'll find it to be worth the money.

I guess that's why one of the first things I wanted to do for this thread was post the Caregiving Alliance links. Here, the equivalent organisation has unbelievable tentacles: it's almost as if money won't stand in the way of filling the need. (Well, lack of money) They will find a way to help a famly carer get urgent help so the carer stays strong and sane, even if it's only a few hours each week, because without those hours, the entire fabric of the family will fall apart.

Which is not to say, an evening free of kitchen is an absolute gift!!! :-D

We are very fortunate that money is not much of an issue any longer. (Dealing with seniors and their perception of money could be a whole other thread.) I did the research and lined up an aide to help my MIL 4 hours a day last June. My SIL visited just before the aide was supposed to start and together (MIL and SIL) they decided that an aide was not necessary. Oy!

Due to some recent setbacks I think that my MIL may now be more receptive to considering an aide. I described it very romantically and said that it would be as though she were a queen and the aide(s) are her ladies in waiting.
She seemed to like the idea yesterday.

I am not complaining about all the folks I care for right now. It is what it is and I hope that I am paying it forward somehow. It is the logistics that irk me sometimes though!

Thanks for "listening". That's huge.

kmk, I'm glad the money is there. Your MIL might warm up to the idea quickly enough. Maybe if you said the aide is coming as a trial, she'll be more flexible.

I'm happy my mother was all for the aide. This woman aided when my mother's husband was dying, and my mother kept her on after he died. Now the aide does everything for my mother: cooking, cleaning the house, changing my mother's diapers (I hate typing that), cleaning my mother, changing her clothes, and even spoon feeding her. It's so painful to see my mother spoon fed. I don't even know if I could spoon feed her myself. Why is this so primally upsetting?

It's the brutality in the power shift in roles, the shift in functionality, Tom. While intellually we understand the need, emotionally it really does grip us where we are most vulnerable. And you know there is no coming back from this, which makes it even worse.

Intimate personal care is something that strangely I was not best at for my mother, but would have grown to be better at; however it is something I know I could never handle with FIL. Feeding my mother would ahve been heartbreaking but manageable, since in our family everything above peg feeding was kinda OK. Again, I've about reached my limits in dining/food prep with FIL since he's rejecting nearly everything everyone else is preparing for him, and openly removing and cleaning both dentures during meals regardless of where we are. I know for him it's fear, I know it's avoidance of change and it's trying to control the rate of loss, but it's something that proving beyond my ability to live with.

kmk, it's a creative approach to float the idea of finally getting the retinue your MIL deserves. However, we have noticed (as an agency) that that notion tends to make life hard on the workers - as it actually isn't a fantasy in the care recipient's mind, no matter much they say they really know what's fact. The workers tend to be treated as little more than servants, and domestic help, and not given the credit for the skills they possess in the caring arena: observational skills for medical and allied health status, nutrition support, psychological training etc. We tend to talk about how it's great to have someone 'working with you', encouraging the recipient to continue to do the tasks they enjoy but not wasting energy on the things that tire them or are becoming too difficult (or they now forget to do), or swap the light dusting (careworkers don't dust, so MIL can protect her treasures) for the dishes (they'll do the dishes). The careworkers can help keep on top of beauty tasks like hair and nails, so she's always showing her best to the world even if the world is mainly the family and neighbourhood - they will help her look gorgeous whenever she steps outside her bedroom (that can encompass some wardrobe tasks too: repair, cleaning, thinning etc; also a bit of safe exercise). It's every girl's fantasy to be a princess; your mum can become one for 4 hours a week and it can be a secret between her and her new friend, but the friend should perhaps be the Magic Fairy rather than the Lady-in-Waiting which is a secret code for servant.

We have a new challenge: encouraged FIL to have a male careworker, Tim. It took quite a bit of persistence, and Tim is so great at his work, but now FIL can't imagine not having Tim around. It's like Tim is a younger brother or nephew, it's a real blokey relationship and as they're both from the UK originally, it's comforting for FIL. But that's it - he's fixed on Tim, can't imagine working with anyone else. I need to work on getting him to be more flexible. (WE love Tim: he's smart, he's observant, he's funny, he's got a stack of tricks up his sleeve to get people to do anything; he can cook as well as clean and can manage a range of personal and recreation activities...if I weren't married, I'd make a play!)

Thank you for starting this kmk! I help my mom take care of my father. He has cancer, mild dementia and other various health problems. My mom has trouble walking and can't get out all the time and I work full time. I have a daughter in college, who is awesome, but she still needs me for things too.

We just got back from 3 days in the hospital and I decided to take a look on MOL, where I mostly lurk. If it wasn't for my family and friends, both near and far, I'm sure I would have lost my mind by now.

NJ, you might also benefit from a quick browse through Greenemom's Place, in Blogs, which is full of really helpful info for chronic disease esp cancer. it' a huge thread, so maybe just go through the last few pages or so for starters (to get an idea of the main writers you'd identify with) then consider maybe PMing or writing there or here for more ideas/pointers.

Also, there's now a balance thread in blogs, which may have some useful links with info for your mother.

We got thrown out of FIL's halfway through dinner tonight, because he reckons we never listen to him, never let him finish what he's saying, don't understand what it's like to lose your memory, don't know what it's like to rebuild your life, don't know what it's like to not have finished school...

He threw a proper tantrum and locked the doors, turned off all lights three seconds afterwards and I nearly fell down the stairs, and walked into all kinds of hazards in the garage as I went to throw away the rubbish.

D is now on the phone to the 24-hr phone counselling service, trying not to cry and trying to debrief, and stop shaking. I'm just trying to get over the punch in the guts of being told that, with my long-term brain damage, I have no idea what living with memory loss is like. Yep. That's why I write everything down, can't throw anything away and panic over every half-remembered snatch of conversation...why I worked in rehab for so long, relearning new techniques for everything.

Joanne I am sorry about your situation. As staggeringly painful as the argument was,perhaps it will be a turning point. Sounds like something had to give.

sadly, think this is indication of more-of-same, rather than a point for hope. Maybe a beginning stage of aggressive behaviour, if we are exceptionally lucky but even that will take a while before otehrs see it sufficiently to change his situation. It was really really hurtful tonight, and he meant to be spiteful. We were beign paid out for leaving him alone all day, all week (even though that isn't the 'real' reality, and the times he is alone are by choice)

Hi all, wow, I send support and hugs to everyone above, and those to come below! I have a quick question -- has anyone found a good gerontologist who can help me see if my mom is on the right balance of meds? thanks!

;-) I could help if you were here!!

*****

we've had apologies of sorts this morning, then back to normal. Then, 3.5 hours later, panic/emergency call from car repair place: his car broke down in traffic this morning and he was stranded. Took him a loooong time to get help, get sorted, find our number, we got there and no-one could find him... very glad we'd made up, but honestly, we're looking more and more like having to enact Enduring Powers. Sh*t.

Addiemoose, we saw Dr. Heath at Summit Medical Group in Berkeley Heights. He should be able to help.

Thank you Joanne! I will take a look at both blogs.

Joanne, that must have been heartbreaking. Would I be right in thinking that a lot of what is "talking" is your FIL's illness and the terrible turns his own brain are taking? He doesn't remember/know what you are doing for him or how he sounds, right? I'm not defending him, just saying maybe you and D should try to build barriers to protect yourselves and not try to have a relationship with him based on how a healthy person would behave. Nearly impossible, I'm sure.

I sympathize and share your sorrow and fear... my mother's expectations are becoming more unreasonable daily, and her memory is growing less and less reliable. It's horrible to watch her and our relationship start to deteriorate.

I debriefed with the National Dementia Behaviour Hotline (who knew we have such things?? The Aged Care Help website is a wonderful source of info!) late afternoon yesterday - it's now early on Sunday morning for me. I had been reading up on the paperwork and procedures for Enduring Powers of Attorney in this State so I can answer questions, and also so we know what the tests are for legal capacity - I truly am not sure if FIL will be able to meet the standards required for him to be able to sign legal documents appointing Attorneys. More of this later.

I rang that Hotline because most of the other listed services that were designed to support carers in this situation aren't open after hours. Bloody ridiculous, but that's a funding issue. Anyway, it meant I got to speak with a behavioural psychologist specialising in dementia - a wonderful caring woman named Libby who spent over 40 mins discussing this with me. Result: she believes he is experiencing episodes of delirium and that is one. (It may or may not be over) Must be discussed with medical adviser ASAP, and he should not be on his own while this is happening, for safety reasons. I've not seen 'delirium' in dementia before, out of a supported residence, so I had no idea what the markers are to look for. I know there is no obvious medical reason for the way he's be acting esp as he's just had a series of blood and urine tests. She explained the rapidity of onset, the aggressive and unchanging speech patterns, the changes in sleep behaviour (he's getting up earlier), and the increasing lack of empathy for others' situations, added to the denial of real-world conditions gives her the diagnosis. The changes are too sudden, with no explanation. In hindsight there have been other milder episodes over the last few years.

I think if this turns out to be true, a whole range of options are now lost to us and we have little choice but to seek permanent supported accommodation. And that will probbly be highcare, which means locked. Sh*t, again.

If he fails the tests for legal capacity, we/his sons are not able to be his appointed Attorneys. Instead, the Adult Guardian must take over. And that is horrible, messy, difficult to get out of and a whole ballgame I know little about.

I'm posting this link to help others possibly in the same boat. Scroll down past the first few headers to the meat of the text - this is actually the entire booklet. It was put on the Health Department website to educate community carers (paid), community aged care workers, family carers etc:

http://www.health.gov.au/internet/main/publishing.nsf/Content/ageing-publicat-dementia-delirium.htm

Am feeling both awed by the support networks and a little overwhelmed.
a) Libby from the National Dementia Behaviour Manangement Hotline rang back the next day to see how we all were - she's actually in South Australia. And yesterday (it's now Tuesday morning), I received calls from the local Dementia Support Service going over what I can do and what they can do for me, and from the local Alzheimers Association branch.

b) We have an appointment with the GP to thoroughly check FIL today; I suspect we won't really find anything, partly because it's the GP. I also spoke with the psycho-geriatrican yesterday - in-between flights around the country and before he goes to an international conference -who said if there is another incident I have to call an ambulance, have him taken to hospital and let them make the call for not discharging him to his residence because he is not safe alone. Also that he probably will not make the legal capacity tests so we must go to the (Public Trustee) /(Adult Guardian)/ (QCAT - a Tribunal) and have a guardian appointed, hopefully within the family.

c) The quote on the car damage is over $10k; the car is not worth that much. There are signs the car was driven through several over-heatings, and the entire engine needs to be replaced.

D spoke with his brother last night about it, and about the Enduring Power. the other brothers 'just want their dad to be happy' and they don't see that in a nursing home setting, no matter how glamorous. Fact is, he doesn't know how to be 'happy' any more, for more than 5 mins at a time, and he doesn't know what he wants to do anymore except not have to live with change because it's scary. Edited to add: he doesn't know how to be happy and he doesn't know how to be safe.

This is it. We're facing The Crisis. And FIL is going into care by the end of the year, whether he's ready for it or not - unless tomorrow ACAT reassessment finds a much better solution for him.

Good luck with this, Joanne. It is difficult but I found with my in-laws, and now observing with my elderly uncle and aunt, that many close relatives seem unable to make any plans or decisions until there is a crisis. And when you suggest an alternate path before the crisis, you can become the nexus of their anger and denial. I hope to handle things differently with my parents (and they seem amenable so far). I also hope when we get to that stage we won't back ourselves into a corner or put our kids through these miserable situations with a little planning and thinking about reality. I've seen it happen way too many times.

><
FIL made the decision this morning that he won't repair the car nor purchase a new one. He is not driving any more.

It's like he imploded, collapsed in on himself, afterwards. The doc has ordered a battery of tests including brain scans and we're seeing again on Friday morning. After making sure FIL was comfortably settled, I left and 'shouted' myself lunch - and at the next table were the owners of two local well-regarded nursing homes (high and low care). The cafe owner arranged an intro, we exchanged contact details, and tomorrow I ring them to schedule tours. Kismet??

kmk said:

Joanne I am sorry about your situation. ...perhaps it will be a turning point.

No more irrational roadblocks. Work can be done now. Glad you came through it.

Here is a resource that I was "subscribed" to many years ago, pre-website: http://www.caps4caregivers.org/ My father, who was rather forward-thinking about his and my mother's eventual needs actually connected me to it. So, for a number of years before I actually became a caregiver, I received their monthly newsletter which had a lot of good info. At the time, at least, most of their 'in person' activities were in/near Pennsylvania and I was still in Texas, so I only took advantage of their printed material, but it was helpful.

Also, I can't remember if I've posted it here earlier or not, but for anyone whose Senior qualifies for hospice care, DEFINITELY sign up for that. I don't know all the details and I know that my mom's initial "qualification" was based on a health crisis that was deemed "terminal" at the time. However, that crisis passed and she was still very much alive and we were told that she continued to be qualified due to her dementia, although it was our choice whether to continue the service. We DID elect to do that, and it resulted in quite a few helpful support services for the rest of her life, over a year in her case. Medicare covered ALL costs, and I know we were told that it could include potentially pricey services such as health aides, housecleaning, etc. We already had those through the assisted living arrangements that were in place and we didn't want to switch our personnel (whom we had come to love) and were lucky that our parents had money to pay for this. But it would have been a real lifeline if money had been tighter. For us, what was really great was that it added a regular nurse visit (weekly or more often when needed) and a regular social worker visit. Also, we were able to have the physician who was the hospice director become her regular physician, which was very helpful. (We needed to find a new doctor for her about that time due to a retirement.) Having additional and varied visitors was great for my mom and really helpful for me since I was at a distance. All of her various helpers and visitors had my phone number (since I was in NJ and she was in Texas) so I could get updates whenever I needed them and it was a great weight off my shoulders at times. For a family "hands on" caregiver, I imagine that would be physical as well as emotional support. And, at the very end, being in a hospice situation is SO much better than the alternative. Neither of my parents had to die in a hospital as a result of the "in-home" hospice care option.

Thanks sac! I just joined AND I just used a link on that site to print out a list of meds that my family member takes. What is really great is that the list is saved on the mymedschedule.com website and I can pull it up even when I forget to bring it with me.

A colleague who blogs about aging just posted a link to a useful-looking e-book titled "You and Your Aging Parents," a PDF download about halfway down this page:
http://www.agingredefined.org/

I can also recommend the blog, The New Old Age.
http://newoldage.blogs.nytimes.com/

Wow, this article in particular seems relevant:
http://newoldage.blogs.nytimes.com/2012/08/13/struggling-with-an-abusive-aging-parent/

Today was even more huge than I expected - I had a whole 90 mins to myself, and fell so overwhelmed, it's no wonder my blood pressure is so high.

The big meeting went well, and the Brisbane BIL did make even though his daughter-in-law went into labour this morning :-D [babe was born early this evening: everyone is just ecstatic!] No surprises that he doesn't think there is anything much wrong, and was basically telling FIL to 'just say yes' to what was proposed for his social planning. Was truly amazed to hear that I wouldn't step into a car with FIL driving for over 10 years (i'd picked things no-one else had, yet I still defended his right to drive). I won't go into details - not nec - however the care agency basically said we need higher service levels NOW even though they are really hard to get because the federal govt has to agree to them. BIL was talking about how to fudge the capacity tests for signing the Enduring Powers, don't bother with ambulances, and he needs to arrange to tow the car without consulting his dad. Everyone else was talking about how to make it work if we don't get extra hours, and I burst into tears and said I couldn't do it. I have orders from the doctors that tell me one thing, the family telling me another, FIL telling me something else and I have no time when I'm not thinking/dreading/stopping. Assessor turned to me and 'Stop. You need to halve your expectations and step right back. You need to plan and go on a 2-week break NOW. You need to take them at their word'.

She was gentle but firm, and we spoke about it later. But she's right. The services are there to step in when the family can't, and I can't fill the gap. If Brisbane BIL doesn't see a problem, the Sydney BIL doesn't see a problem and FIL is in denial then it's not up to me or D - whatever happens is the result of THEIR DECISIONS. If I am not there, something will fill the vacuum - boredom, isolation, a crisis or maybe a new friend or interest will emerge, or FIL will decide he's better off in different accommodation.

I'm the only one in the family who knows the medical history. The allergies. The medicines, or where the lists are kept. It's not for lack of trying to tell the rest of them - they just don't want to remember. They don't know who the doctors are, how to contact them. But they hold what passes for EPoA. I'm the one who knows FIL's daily and weekly routines, what he eats and when and how much; I'm the one who knows what signs show something is brewing with his health, and what the problem is likely to be; I can tell from the kind of objection we're getting which tablet he's missed, and whether he's taken too much laxatives...AND that's why I need to step back. D needs to step back too, a bit. FIL has to be a little less reliant on us, a little less expectant that his life won't change and also that he will always get his own way. He needs to learn that there are many ways to live independently, and that most of them don't involve running your family ragged or making them feel guilty for earning a living or being unwell.

Reality these days is: you can choose to die in your own bed at home, or live more safely in group living of some kind. If you live on your own by choice, don't grumble about it - the consequences are because of your choices, so accept the services offered graciously and be as sociable as you can. If you live with others, be gracious in company, be sociable when possible, be thankful for the support including medical support and accept whatever communication your family is able to share because they may not always be able to physically visit. It doesn't mean they don't love you.

After the meeting, I spent the day driving D to work, filling our petrol tank, cleaning his possessions out of FIL's car, driving FIL to his club, collecting my meds and supplies for tomorrow's work lunch, taking FIL home and collecting D from work, following up on a new lunch venue for a work outing, then making dinner...I'm not reporting to family about today, BIL can do that.

I have to go and meditate now: I have to wake in about 6 hours, go to work in 7...

Joanne - you are fabulous! Someday the BILs will recognize this and it will happen sooner if you do step away. Sleep well, sweetie!! ><

I'm not, really, but thanks. There are people here on MOL who do so much more. And what I wrote above was mostly what Sandy said or what she was implying. I'm not sure if Scarlet has checked here yet, but it will be similar for her family, and for the other families in need, with a difficult or very time-demanding elder and one main carer.

I can do 'dignity of risk' quite well, and have been able to let FIL live with that principle, quite comfortably.
I can also do 'call their bluff' kind OK - take them at their word, allow clients/family to their own way until X happens and then tidy up the mess (that's what I grew up seeing my mother do, although she wouldn't have recognised the principle).
But this is a different kind of advocacy principle. This is taking the client/individual's belief at face value, examining for safety and risk within the support system, agreeing with them to their needs and then me not having to be the one responsible for any of it. Because it is FIL's plan, and BILs's plan. There are safeguards within the plan, but no-one can plan for every eventuality, and no-one wants to be cottonwooled - they're fighting for independence so they must live with the consequence of that decision.

Sandy's motivational interviewing was incredible to observe: picked up all the weaknesses and didn't set out to trap FIL with his answers. However his answers were at such odds with the support agency's experience and my/D's stress levels that she could see at once what was going on.

Joanne, it sounds as if you have had a breakthrough of sorts. I'm glad, and I hope you will take Sandy at her word and follow her advice. You've needed a break for quite awhile.

Hah. If only!!

Follow up: Today we were going to do a gentle scheduled day of FIL's medical, my osteo, D's dental, dinner together. FAR FROM IT. On the way to getting D to work, he showed signs of cardiac pain. We consulted the first Aid officer as soon as we got to his owrkplace since he wouldn't deviate and go to the hospital or after-hours clinic around the corner (both on the way to work). Work sent him to the doc up the street: not cardiac, not asthma and apparently not gall bladder. Possibly pancreas or something else - here have these blood tests etc. Go home. And see your own doc TODAY.

(I get home in just enough time to gulp coffee for my breakfast, then take FIL to his doc for his test results from Tuesday. Turns out he's had 3 microscopic TIAs since last Friday, and also doc agrees he can no longer hold a driving licence, and that he does not have legal capacity to sign an Enduring Power of Attorney or a Power of Attorney document or any kind of legal document. I had not asked the doc, not prompted that part of the discussion. FIL decides he needs a haircut and can't wait for this afternoon's careworker. I drop him off at home with just enough time to get to my osteo appt. When I return home, D gets to his doc)

The doc from this morning rings me while D is at his doc this afternoon. The tests came back to him, instead of to D's doc. URGENT!! HE HAS INTERNAL BLEEDING AND NO-ONE KNOWS WHY! I give him the practice number; I get a call in a few mins from the practice: an ambulance has been called and D is to stay overnight in hospital while they work out what is going on.

So now my husband is in Emergency, and will spend the night in hospital. Meantime I have to comfort his dementing father, prone to falls and TIAs, who lives on his own. Tomorrow instead of being with my husband, I have to take his father to Temple, and back again. And entertain him all afternoon. And on Sunday. Our back-up (BIL) is in Melbourne celebrating being grandparents.

Yep, the proverbial has hit the fan.