Caregiving Thread: Sources, Answers and Support

Wouldn't this be a good thread?

I am currently caring for a senior citizen, an injured husband and two teenagers still at home. I have often used the wealth of information this community has to offer (as well as all the shoulders to cry on!) Perhaps we should centralize our Q&A's and sources.

Unlike a purely medical thread, this could also include topics like self-care, childcare, special transportation, handicap/stroller accessible destinations, adaptive equipment etc.

I will start with three thoughts I have this morning:

1) I highly recommend that anyone renovating a bathroom consider installing at least one shower in the house that is NOT in a bathtub. If your walls are open while you are doing this, go ahead and reinforce the walls between the studs with a piece of plywood so that grab bars could be installed at a later date if needed. You never know if you will need it but it is there if you do.

2) I have never set foot into SAGE Eldercare in Summit but they have been fantastic on the phone with any of my inquiries. They really know all the resources available locally. I would also imagine that they would know the names of similar eldercare facilities in other towns. (Thank you to those of you who led me to SAGE when I tried to "source" some things about a month ago.)

3) Also, I would highly recommend any caregiver of a senior citizen to bring a geriatric specialist into the mix of physicians seeing your loved-one. The specialist is NOT a replacement for the internist/GP but they are a very sensitive set of eyes and ears who can help guide the patient's medical care in the right direction. My MIL can not wait to go back to the geriatric specialist because he showed her such respect and genuine interest in the her well-being. She is making list of things to tell him about rather than her internist and that is a step in the right direction.

I don't know what I can contribute. My mother is dying, and she has 24 hour care in her home. I visit and just sit around and chat.

Tom, you have already contributed so much by simply describing what you have gone through to get to this point.
I was fascinated to read about the memories evoked by the sense of smell that was mentioned in one of your discussions.
I am purposely setting aside some things to use in a sort of sensory scrapbook now. Thank you.

Tom_Reingold said:

I don't know what I can contribute. My mother is dying, and she has 24 hour care in her home. I visit and just sit around and chat.
That is exactly the right thing to do!

Thank you so much for starting this thread. My sister and I care for our non-senior mother who had a stroke a year and a half ago and it is so hard to find people who have answers and guidance for you. We are both younger as well and so none of our friends have had anyone go through something of this degree. I do now have a wealth of information and resources and am very willing to share with anyone. I also still have situations arise all the time where we need help and guidance, so thank you for starting this thread!

A friend, who is going through this with her mother in this area, gave me the following list/information that she had obtained from a eldercare information resource when they were in a home care situation looking for aides. My experience was all in Texas where my parents lived, but I was trying to help out another family member with local needs, which is how I came to be looking for the information. Another question to ask which was not included in the below info, is whether the home care aid is an employee of the agency or becomes YOUR employee as there can be tax/insurance issues associated with that difference.




CEDAS HOME CARE 973-746-0165


EXECUTIVE CARE 973-575-4141

HELPMATES 973-575-6605

HOME INSTEAD 973-379-4910

METROPOLITAN 973-325-3040

SENIOR BRIDGE 973-533-1730

SENIOR HELPERS 973-360-1500

VISITING ANGELS 973-738-9551

We do not endorse any particular agency; we list agencies for your convenience.

Think of the issues which may be important to you in finding an agency such as:

Compare training, screening, selection, supervision of employees.
Determine whether you need “hands on” (Home Health Aide) or “hands off” care (Companion) as you should not pay for more service than you need and conversely should make sure the person you work with is appropriately trained for “hands on” care.

 How do they handle 24 hour care?
 Shifts? Live-in?
 Same aide 7 days, or one aide 5 days and another on the weekends?
 Same aide for two weeks then one week with another?
 Do they drive?
 Can you interview them beforehand?
 How will this time be billed?
 How do they handle incompatibility/interruption in service?
 What do they mean by “light housekeeping” or “light meal prep”?
 Do you pay by the Day/Week/Month – What is your commitment?

Some of the above agencies offer a flexible and varied list of “hands off” services- errands, laundry, housekeeping ….. ask if this interests you.


SAGE was a true lifesaver for me when I was thrust into unexpectedly caring for my dad a number of years ago. I attended the Caregivers' Support Group which meets one Wednesday evening a month. I looked forward to this, as a safe place to vent, to share the experiences of those similarly situated,and to learn of the wealth of resources available. While I never had an opportunity to use it, I would never have learned of the Respite program, which provides for a safe place for the loved one needing care,while the caregivers can get a break. My father will be gone 10 years at the end of this month, and Ellen McNally, the wonderful social worker who was the group leader,still follows up with me,regularly, just to see how I am doing. I urge anyone who is drained from all the stress of caregiving, to take advantage of this group. It is free, but the service is priceless.

sac said:

Tom_Reingold said:

I don't know what I can contribute. My mother is dying, and she has 24 hour care in her home. I visit and just sit around and chat.
That is exactly the right thing to do!

What I mean is that I don't know what to contribute to this discussion except to say that I'm in a similar boat, but things are taken care of as well as possible.

Yes, this thread is a wonderful idea. Thanks for starting it, KMK.

Even though my mother is on Long Island, so the phone numbers and local organizations listed here won't help much, the general information will be invaluable, I'm sure.

You might try and give the folks at SAGE a call, just to add to your own information.
They probably have a "sister" organization near your mom and it will be good to get some info BEFORE you need it.

Another resource for caregivers is a website called

Don't forget about support groups such as this: and state by state self-explanatory, really. For us, it's the Carers Association. As Calli says, support groups - by phone, online, in person. 24-hrs, everyday. because there will be times when something breaks the camel's back and you have to cry, or scream, or need someone else to suddenly come over (at a moment's notice - most agencies require notice).

You might not think you're a 'joiner'; or that you need such vague, 'new age' support - until you know what resources are already out there to help you, you'll have no idea of what to do and how easy it can be to manage the emotional and intellectual load.

Also a quick race through some of the last few months of Greenemom's Place in blogs may give more advise and suggestions for people just starting the journey.

I am surrounded by bad news today.
I am fine, healthy and happy but starting to feel the tug downwards into all of the bad vibes affecting my loved ones.
Making light of their troubles doesn't work, ignoring them doesn't work so what's a girl to do? Distance oneself or plunge head first into THEIR melancholy so that I can quickly come out the other side? I would rather not. Ugh!

This is the time to use the phone resources that support you. Here, I'd phone the Carers Association (that's your Alliance) hotline, or even Beyond Blue or Lifeline, just for that few minutes of sympathetic listening by someone not involved but who can discern the issues and only when needed perhaps suggest one tip I hadn't thought of, and get me through another day. That's usually all I need.

We have a poster-sized copy of this up at work, so all the care workers can take time out to use the tips as they need to. With our client group, it's essential self-care and vital for office dynamics.

When I did the Mental Health First Aid course a few months back, they endorsed a similar workplace list, just written in fancier jargon.

Adding this to the pot so that it's searchable for anyone helping an elderly person relocate:

I recently found out that Durable Power of Attorney and Health Care Proxy documents are not necessarily transferrable from state to state. In other words, if someone had their documents prepared in NY, but are relocating to NJ, they probably need to have their documents re-done. Each state uses slightly different wording from the other, and in the legal world, that can change everything.

Here is a wonderful site recommended to me by an attorney (not involved in estates or elder care) that has downloads of every state's advance directive documents:

kmk - it isn't cheap, but there is an option you might consider either for a caregiver break for yourself, or for a future vacation.

Arden Courts was quoting a Daily Respite Rate of $235 a year or so ago back when we were planning for my mom's future. They are an Alzheimer facility, but I'm thinking it might be likely that other facilities would also offer short term respite care.

Recently, the best two ways to deal with this are (1) talk about the feelings that come up, which helps me understand why I'm nervous or angry or whatever, and (2) focus on action, such as what to do next.

I think those techniques are very good ones, Tom.

Thanks pdg. Luckily, I am not physically caring for my MIL round the clock.
I am, however, a sounding board for her emotional ups and downs as well as her chauffeur, medical assistant, lunch companion, personal shopper, technology guru, advocate, beauty adviser, travel agent and CFO almost every day.

Isn't it strange how that can takes such a wearying toll? It "shouldn't" sound unreasonable, and it "shouldn't" become such an intrusive chore, yet the time seems to come when suddenly we realise it's all too much and there is never a day when we're not free of expectation - that they will call, that they will need us, if not them then another who is meant to help but can't or won't or has a related need; or that our time out/off is too short/not enough/selfish....

Whe it gets too bad, and I find I'm losing my core of calm, I try to find a 'me' oasis: MOL time, or an exercise hour (which means 2 hours, incl travel and changing), or maybe stopping at a fave nearby cafe and doing the crosswords over a cuppa and chat with stray diners or's 'treat' will be housework, as I'm finally able to get some done!!

Today, I need to get my FIL's name on the lists for permanent care, and talk to his doctors about removing his drivers licence. I need to talk about his non-compliance for balance and strength exercises, and what that means for his long-term safety, and how that means he's no longer safe at home. How he's forcing us to treat him like an unruly teenager. I hate this, and resent that our times together have become times of resentment and difficulty, because they're the only conversations he knows to have with us. I have to start this today because in two weeks I have to report our progress, so we can get extended hours of support at home. If we have to start the physical care as well, or have him on-site, I know I will not be able to handle the strains.

This thread is a life-saver! Thank you for starting it kmk and for contributing to it, everyone. Everyone needs a break now and again; no shame in admitting that to ourselves. Ignoring the facts doesn't change the facts, right? May as well try and go forward armed with some self-help techniques and hotline numers, plus pertinent helpful info, as well.

I woke up this morning with a clear picture of how to handle some of the negativity I have been hearing from my senior.
Today I redirected any self-pity laments to "Why don't we sit down and count your blessings?" Within about 90 seconds my senior admitted that she is MUCH, much better off and able to care for herself much better than most of her friends. I got a little graphic and truly non-socially correct discussing and mimicking the limitations of others and luckily had the old girl slapping her knee with laughter.

Also, the geriatric specialist suggested that our "patient" either sing more or at least read (rhyming) poetry out loud for a minimum of 15 minutes a day. It is supposed to help with her speech fluency. I found a couple of great books titled something like "Poetry to Read out loud" and "Love poems to read out loud" and presented them to her today.

What a hit! Limericks, Dorothy Parker, ee cummings, Shel Silverstein, Shakespeare, Blake, you name it. The books were so much fun, and encouraged exaggerated gestures and acting, that I think I might use them for our New Year's Eve readings this year!

What a delightful activity!! My guy won't do that now unless there are loads of others around actually doing it and he can join the laughter then make puns around it. And even that is hard going. But I've seen it work with people at work.

Gotta find somethign similar in Greek, Italian and Romanian...!! THANK YOU!

We had the big consultation with the regular doctor yesterday, after which FIL's car keys were meant to be taken away. The two local sons (shemademedothis and his Brisbane brother) attended, so I sat outside. Apparently Dr didn't look at the blood test results, wee test results and they couldn't get a decent heart monitor result yesterday so when the blood pressure was OK, FIL was allowed to drive for 2 more weeks. BIL won't come back for that consultation: his first grandchild is already a week overdue! He is focussed on being with his son and DIL, at the other end of the country. (That's natural, and good; I'm not complaining, but it is hard because the other brother is still playing communication games) -Oh! FIL smiles when BIL talks about the baby, but won't do anything about buying a card for the family, let alone a gift, or ringing them or planning to see them - instead he talks about the violence and crimes and constant bad weather anywhere but in the village complex where he lives; talks about how he doesn't know anyone or any place in their city (visited it annually for work for over 30 years, in the same area where they live - plus my family live there too. He used to drive to visit my mother); he knows he can't manage another trip without his late wife, and he's also scared he'll die like she did. He jsut doesn't want change at all and we can't talk about any kind of change.

So - reassessment for services and accommodation is next week. As FIL is still driving, we are not only unlikely to get more services, we are likely to have services cut off. I have already told the family I cannot live with him, and I cannot handle intimate personal care for him. His intransigence is worse, his non-compliance is becoming frightening and he is becoming driven by fears. But he's still in the stage where he appears reasonable and coherent to anyone else (BIL is starting to see cracks, and it really frightens him). I'm feeling doomed.

Joanne, can you reschedule the reassessment for services and accommodation until you get past the two-week mark and FIL is PROPERLY evaluated re: driving?? It's ridiculous that the doctor didn't look at any test results and therefore is letting him drive two more weeks. WHY didn't he look at the results he had? This doesn't add up. But I would try to get the reassessment appointment moved back so you can get a real evaluation done.

After a day with two LONG doctor's appointments, I had the "distinct pleasure" of dining with my husband (who had leg/knee surgery yesterday), my MIL (who had 1/2 a beer and strangely got snockered) and my two surly teen daughters in a Maplewood restaurant tonight.

I spent all of my time being the only able-bodied driver, handling her walker, keeping her upright, keeping track of his cane, providing a chair for him to prop his foot on, correcting the teens' bad attitudes and falsely smiling all the while. grin

All I can say is that I have no dirty dishes or pots or pans in my sink tonight and I am happy.
There are days when it doesn't take much.

kmk, that's too much for one person. I wish I had a suggestion.

kmk, have you investigated the possibility of getting some temporary help? If your MIL is on medicare, they may pay for you to have someone in for four hours a day, to help "keep her upright." And to help her bathe or dress, or do whatever will lighten your load a little.

Had a long chat with the assessor today, prior to next week's visit: as it's not about us but about FIL, it really doesn't matter UNLESS he's declared incompetent or demonstrates incompetence. that's not likely, so we'll just see what eventuates. She's really nice, and she's supportive, and she's also clear about what she can do. I'm glad that the case manager from the current agency will be there as well; we'll get some perspective, and maybe a 6-month plan.

kmk, here you would definitely be in line for carer's respite: that could be in the form of someone to sit with your family while you go out for a bit, or you sit with them while someone does your chores, or someone takes them out while you stay home. At the very least. 6 hours a week, probably free. And then MIL would be entitled to some support in her own right, 6-10 hours a week, which would include someone to help with grooming, social support and even a free medicine review annually. I'm wondering if there's some interaction between her meds and the alcohol or spices in her doesn't take much, and it's not always the obvious meds.

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