Caregiving Thread: Sources, Answers and Support

We found that Triple A tried a little too hard to keep seniors on the road.
My MIL was 85, blind in one eye, had lived in an urban setting without a car for 15 years and was angry that her kids wanted her to stop driving rental cars on occasion. She went behind our back and got Triple A to "certify" her as an excellent driver. (She then had a minor mishap, scared herself and stopped driving when SHE felt it was time.)

HaX3, you say your mother isn't elderly... that makes me wonder why she is having trouble driving well? Has she had a full-on medical check-up recently? Eye and ear tests? Neuro eval? I'm wondering whether something is medically wrong that is causing problems. Apart from that, I love Joanne's idea of a driving eval and brush-up driving skills course. But I would try to get her to investigate this a little closely. No one who can't be described as elderly should be showing signs of deteriorating driving skills.

Joanne, there are no words. I knew most of your story from individual posts on other threads, but this is the first time I've seen this thread since the storm. Wow. I'm glad things have calmed down somewhat for you and hope the good trend continues.

I came back to this thread because as many of you know, my mother had a horrible time during the storm and its aftermath, spending three days on her own, then going to CT with my brother, then back to Long Island to get her elderly and crotchety cat, then back to CT after a miserable night in the living room with my brother feeding logs into the fireplace in the dark, then back to Long Island once they learned her power was back on. Her phone is STILL not working.

My brother has told me in the past day or two that she is "running scared" now, that she has spoken favorably about Florida as a place to live (she used to hate FL) and that she is worried about her own faltering cognitive abilities. So now is clearly the time to have a conversation with her about the next stage of her life.

I've been thinking for awhile that we could implement a similar scheme to what has been done for her best friend. Alberta was "sort of" moved to northern NY State by two of her sons who live up there. She still has the family house on Long Island, but she is now spending most of her time in an apartment close to one of the sons.

I think it's time to ask Mom if we could get a small apartment for her in NJ, probably in South Orange or Maplewood, or maybe even West Orange. I like the apartments on Vose Ave. for her, because they are so close to the SO Library and Eden Gourmet. I would be less than two miles away and could even *walk* to her place if I had to. I could keep her company several days a week, take her to doctor or dental appointments, take her grocery shopping, take her to church with me when I'm singing, introduce her to plenty of really good folks who would be friendly and kind... the advantages are numerous and huge.

What does anyone think of this idea? How would you broach the subject with your own mother if you were considering this?

The private caregiver who took care of Tabby's mom is loking for a new employment. Ida is highly recommended. If you have opportunity, send PM to Tabby or Tomcat. We will respond next week, as we are still on vacation.

The driving issue is more than just getting in the car and driving like you would at 40: a person with decreased vision can still be assessed as a safe driver under the right conditions, and can demonstrate sufficient knowledge and skills to manage to handle the right vehicle in the right conditions safely. With that empowerment, knowing that they legally hold a licence may be sufficient to maintain a dignified sense of self. further concerns could be assess with the assistance of driving Occupational Therapist who accompanies the driver on a practical test and assesses the skills, knowledge and physiological capabilities of that driver while on the road in charge of a vehicle. If the driver then passes, you can't really query it.

That was the case we had with my FIL. I had my doubts, however the properly trained rehab Senior Driving OTs who had access to his full med records and knew all the changes since his previous assessments kept saying he was fine for another year - if he kept close to home, drove during daylight (before 4pm), slowed down a bit, remembered to indicate left at roundabouts, and they explained a couple of new rules to him. Because he's over 75yrs, here he has to go through a check every year. In May he passed - with his middle son sitting in the back seat and not seeing any problem, even with unexplained dings in the car (indicating a new lack of precision in steering) and not thinking the assessor was right about the speed advice (well, he himself is a lead-foot). Because FIL passed these tests, I could answer any concerns thrown at me with 'he passes the assessments' - it was therefore up to the other party to either report FIL to the police or his doctor and forceably have his licence withrdrawn. Even when we were told that medically he couldn't drive anymore, BIL refused to believe it, because he'd passed the test - destroying the car engine (out of character) proved he was no longer capable of running a vehicle.

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I fear the days of FIL's independence on the buses are coming to an end...his Friday careworker wrote me a note in the Communication Book asking if we knew he'd fallen in the middle of a major road walking to the shopping mall last week, narrowly avoiding being run over? Of course we didn't know, and when I asked when it happened he vehemently denied it. When FIL falls, he can't get back up, and it takes several people to help him up. So this would really explain his sudden realisation that he can't live on his own in that house any more. Now I'm caught: I have same kind of evidence as previously that he's had a TIA incident (the fall, his keys, his sudden return to very calm demeanour), and am meant to have him taken to hospital but he will refuse, it's too late to find evidence of the incident, and my hands are full of D and his approaching surgery in 4 days.

I tell you, if we lived there, I'd be interviewing Ida NOW, hang the expense.

My father passed away earlier today. Thank you for having this thread and thank you for your help. JoAnne, if you get to town, I'd love to meet you.

How awful for you njb&b. I wish you peace and strength.

My father in law died suddenly on Friday. I'm in Florida now with the family. Went to the funeral home today to help make arrangements. Doing what I can to help.

NJBorn&Bred, I am SO sorry. I hope your memories of him are a comfort to you and your family.

NJB&B, it's so clear that you all cared so deeply for this precious soul. He's left you with rich memories to treasure and to share, often. May his memory be a blessing to all whose lives he touched; may you find comfort in the company of others who also loved him.

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Tom, been thinking of you all, all day today and sending PVs for the whole family.

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It's been a difficult day here: the weather has made sensitive people fractious - and my clients are a tad more sensitive than most. We were really short-handed. They were really really difficult, in several languages. One of my oldest, who is stroke-prone, has burnt her left hand on the stove, and can barely use her right hand since a series of falls and CVAs earlier in the year. She managed to lock herself out of her house in 90-degree heat today; had to wait about 3 hours for rescue by family with spare keys. Another with advancing dementia was in residential respite and is not coming back; she is so comfortable where she is, her family just can't see the sense in moving her again. (Wish it always worked so well) Another with what was thought to be acute dermatitis or an allergy to medication has just been rushed to hospital with a contagious skin condition; she's had it for about 9 weeks, and her 96-yr-old husband seems to be managing OK, but he now has their son visiting and making sure he doesn't fall or overdo it. Another's feet have swollen to football size and she can't walk at all; the pain has her in tears but she doesn't want anyone to see, so she just doesn't stop talking all day. I tell you, I'm glad to come home and just face D's surgery tomorrow morning!!

Oh, my, that's a big plate of crazy, Joanne. Tell D I sent best wishes for a completely successful surgery and easy, painless recovery.

It's a group dynamics thing: there were only 7 participants today, but 2 are Queen Bees and tend to bullying but don't see it (they think they're being cute or funny). They also don't recognise that the others have been coming long enough to understand enough of their language to know when they are the butt of b*tchiness. Increasing frailty that no-one wants to admit means that many of the activities that we'd normally do to work off the restlessness are now no longer options (they don't have the energy or interest). And we haven't been able to use our own space for a month, and the novelty has worn off. I'm going to need a new approach next year, or else it will get out of hand, especially as we're cutting down the outings. The changes in this group over the past 12 month have been quite radical and I'm thinking the next 6 months will be critical to their long-term wellbeing: some will definitely no longer be living in their own homes by the end of summer.

Enough of work!! :-D

Joanne, how funny is it that we can now be buddies in the business of elder care, from opposite sides of the globe?

Cat people have soooooooooooooooo much in common, more than other people realise! ;-)

Thank you for your kind words. He was a teacher at CHS for years and a more awesome husband, father or grandfather would be hard to find. Just mho, of course. My heart is broken and I'm doing my best to stay strong. Remembering the good times does help.

Sorry to hear about your FIL Tom. I can only wish you and your family peace. JoAnne and PeggyC, you ladies are so lovely. Thank you again.

NJBorn&Bred,
I am so sorry for the pain that you are feeling right now. I have no words to fully express my sympathy. Although I feel a genuine familiarity with your situation, I have not yet come to the place that you have reached.

Just this morning I met with the first aide we have ever hired to care for my MIL.

I felt as vulnerable as a young mom taking her kid to daycare for the first time. My MIL is as sharp as a tack but I have been her protector for two years and (at her request) I am the one who has always worked hard to keep the public from seeing her physical frailties. It was tough discussing the harsh realities of being 90 year old in such a matter-of-fact way this morning. I have so many emotions about handing over some of the care-giving responsibilities. One one hand, I am over-the-moon happy to become simply her loving DIL once again. On the other hand, I am anxious that I will no longer hear about the aches and pains and heartbreaks she would describe to me. I still want to "make it better" and I need to know what is wrong before I can do that.

This is yet another time of transition for our family. Tom Reingold's comment that his mother felt comforted by having not one, but TWO, caregivers has really hit home with me. I think that once a senior is ready to be cared for - they should be wrapped up and coddled and fawned over as much as possible. It is my opinion that the effort that these seniors put into simply living their own life when they are over 90 should be rewarded with mountains and mountains of love and attention.

In a funny twist, my MIL's 104 year old bridge partner returned (after a mystery absence of about 4 months) just today to the weekly bridge game and kicked everyone's butt! Nothing like being 90 and looking up to the 104 year old!

@peggyC, "What does anyone think of this idea? How would you broach the subject with your own mother if you were considering this?"

Oh gawd, My own mom had her husband so thankfully I did not have to think about this. My mom would have been devastated to leave her home without the reassurance of her own independence and reliability that I would be there, (as of course I would.) My understanding through this Sandy drama is that Springfield and Union County have much lower taxes than MASO. One gentleman shared with me that the same house footage he had in Maplewood is MUCH less in taxes with his home here. And then my experience of bus through the communities of Springfield and on and on to Newark. So many wonderful shopping centers and restaurants I had no clue I had access to. As a Sr. Citizen, $1.30 to Newark Penn? Really. What the heck is that.

PeggyC, I hear you and my experience of the bus system since Sandy has amazed me and opened my eyes to what I have missed exploring our WHOLE community that is within 10 to 15 min of each other.

I say look around at Springfield for a delightful community for her. And so close to you. And so much more reasonable.

It can be very special for her. Take a peak!

Guess what, OOTG? Superstorm Sandy did all the work with my Mom for us. She is now insisting that we get her out of her house ASAP, and she says she will "go anywhere." She was that frightened by the destruction and her isolation. It's heartbreaking that she has been so afraid, but it's a relief that she is now willing to go somewhere much safer.

I am going to start making use of all the resources people have mentioned higher on this thread. Seems very strange to me now that those posts were only a few weeks ago, yet at the time I skimmed them quickly, thinking, "Oh, we don't need to know about this. Mom is nowhere near being willing to give up the house, and besides, she would never consider moving to NJ."

Holy cow. How much can change in a very, very short time. I'm a little in shock. I'm realizing that we are talking about selling the house I came to as a baby of eight months, where I took my first steps, said my first words, and a measuring tape on a door frame still marks my growth over the years. And we are talking about potentially selling the house I have loved for seven years and leaving a community in which I'm very comfortable now (if we end up having to move to a new area to allow us to be near Mom). This situation is certainly not about me, but there are elements of it that are going to be quite distressing, even beyond the changes in my mother and the person she is becoming, as well as the person she is inexorably leaving behind.

So many things up in the air now. I'm going to need some new stress-management techniques.

Peggy C., when the time comes, consider using a mover who specializes in working with seniors. I was so happy with how painless my MIL's move was because of the expertise of these wonderful people.

Also as you formulate where to move consider your mother's social life. The group setting of an independent living community provides opportunities for card games, "field trips", movies and even a litte romance. (Never too late! )

Thanks, KMK. I had no idea there was such a thing as a mover who specializes in senior moves. It makes sense, though -- that must be a HUGE business opportunity for a lot of movers, with so many elderly folk leaving houses for apartments or going to live with their children.

Interesting point, about social life. I had thought an apartment because she is (or has been) so independent and proud of it, and I think she would hate the vibe of an "old folks home." But the prospect of gatherings and field trips is intriguing. I had thought that if she moved to an apartment near us, we would see her much more and take her to various happenings around town, family gatherings, etc., and I had been thinking that if I took her with me to church, she would meet a lot of extremely nice people. The church also has many groups and events that would open social options.

But it's definitely something to consider.

PeggyC,

Kmk's comment about the social benefits of an independent living community is a good point.

So, too, are your thoughts about being near things that might interest your mother. My 96 year-old aunt died this week, She moved from Chicago to be near my cousin in a smallish CT town--not too different from Maplewood or SO. His home is across the street from a complex that included the library, sr. citizens community center, historical society, town hall, etc. She lived in a small apartment in a victorian next door and later moved into a close-by apartment building. She spent many years as a volunteer at the historical society, was active with the senior citizens, and a big library user. It certainly enriched her retirement and gave her independence. Never having learned to drive, she readily utilized the services of the senior citizens bus to take her to doctor appointments, etc. She found friendships at church that extended to activities beyond the religious. She missed Chicago, but led, IMO, a quiet life that was probably far richer than she was willing to admit.

It is great that you are thinking about the kinds of alternatives that might fit your mother's personality the best.

We are finding that as much as we love on another and as much as my MIL truly depends on us, she still wants a life of her own - separate from us. I have found that she has accepted some of the setbacks caused by aging a bit more gracefully new that she sees others gong through the same process. She has compared her new partial-communal living situation to that of a college dorm and she is really enjoying the companionship of all her very interesting neighbors.
You will want to be there for her 100% of the time initially and that will drive you both batty! Time apart is good for everyone.

PeggyC said:

Thanks, KMK. I had no idea there was such a thing as a mover who specializes in senior moves.

It is absolutely wonderful. We had a great person who helped my parents through their move from their home of 50 years to an A/L residence, as well as some moves within that residence. She also helped me with packing and distributing their belongings after they passed away. I would absolutely recommend her, but she is in Texas ... sigh! (I could use her at my house to help ME "get organized".)

Good luck finding someone and be sure to share the info here.

The folks we hired spent time in my MIL's old house chatting about the move and looking at a floor plan of the new place. They helped my MIL decide what to move, what to donate to charity, what to sell and what to ship to family members. THEN they arranged all the donating, selling and shipping! Next a team of 4 ladies carefully packed every single article in the house. They were followed by the nicest guys who loaded it all onto a truck. (Every single team member had been somehow trained in dealing with seniors and the emotional toll it takes on them.) The whole group drove all of her possessions the next morning. While I took my MIL to lunch and to a beauty salon, the same 4 ladies unpacked every single item in the new house. To top it off we were shocked at how inexpensive the service had been. Worth every penny.

Here is a starting place: http://www.nasmm.org/

We used http://www.movingsolutions.com

AWESOME! Thank you so much.

Good grief. So, after a few days of Mom getting her mojo back (and her back up) and saying she wants to stay in her house and hire someone to come in on a daily basis, she lost her nerve again after a woman stood her up for an interview as helper/companion and is now back to saying she can't handle the house and doesn't feel safe. I don't blame her -- I was furious that this woman stood us up. She called to ask if she could come at 4 instead of 1, which was the original arrangement, then didn't come at all. I guess she really didn't want that job.

I can't even imagine what kinds of fears and misgivings are swirling around in Mom's head, but I'm doing heavy research now.

Question: How do I find assisted living places that are really good or would be very suitable for her? Are there sites that review these places, or blogs where family or friends post comments about them? I've put out requests for information to three places in her town and four near us in NJ, and my sister-in-law is exploring places in CT. My husband and I could conceivably move to Connecticut to be near Mom and my brother and his wife, if that works out. I'm just afraid of moving her away from her comfort zone for the past 54 years.

I've had another interesting idea: My mother could move to an assisted living place near her house, Mr. PeggyC and I could move into her house and put ours on the market or rent it, and we could work on updating her house and doing much-needed maintenance, bring her home for weekends and holidays, and get it ready for eventual sale. Is that a crazy idea?

PeggyC said:

I've had another interesting idea: My mother could move to an assisted living place near her house, Mr. PeggyC and I could move into her house and put ours on the market or rent it, and we could work on updating her house and doing much-needed maintenance, bring her home for weekends and holidays, and get it ready for eventual sale. Is that a crazy idea?

Not crazy at all.

Wish I knew of sites that could assist you in evaluating some of the assisted living places you may be interested in.

You would think a blog about those places would be a huge hit, wouldn't you? Maybe I should figure out how to start one. Think of the advertisers it would attract... Wow!

But I'm glad you don't think it's crazy. I will run it past the husband and then if I get his blessing, will float the idea to Mom.

I think it makes a lot of sense ... but what would you do after selling? Would you stay in that area to be near your mom or relocate her AND you?

Not sure, SAC. Still thinking. It could take some time to make some needed changes, and for all I know we'd end up staying. Playing it by ear and thinking out loud for now.

One of the things you do is actually go to visit the places you think will be OK. They'll want you to arrange a proper appointment so they can give a full tour - and from their point of vir\ew it makes sense. From yours it doesn't. You want to know nothing has been staged to be good for you to see. You want to be able to walk fairly freely around the property, talk with residents, maybe be invited to have a cuppa with them or join in an activity. Let your mum talk with a group while you talk with staff - they will give you an information kit that will details costs, options of different kinds of packages (living arrangements, medical needs, extras for cultural enrichment etc). There may be one kit for Respite (short term stays) and another for permanent residency. They should also suggest a site or office for comaprison info.

Some fo the places are owned by 'chains' of developers, who have a person employed especially to help prospective residents and their families select the most appropriate place for them. This role is an objective role: the person takes you first to the places owned by their employers, and then to quite a few others (or gives you info on them, so you can visit them yourself), and make a decision based on comparison and need fulfilment.

I think an organisation such as Caregivers or SAGE will also help out with some basic suggestions and comparisons.

OH - and don't worry overly about the smell of the food in the dining room: they're not trying to attract us! The kinds of medications that most of the resdents are on, and the kinds of conditions that most of them live with, mean that a lot of the food is seasoned in a different proportion to the way we'd do it at home. Many much older people find they have lost their sense of taste and smell, and so many find it difficult to see the colours of the foods on their plates. so the nutritionists and chefs cook and present food for these people as well as for others who have little change to their senses. (We found the dining area of Bayview House smelt, after we visited FIL a couple of times. He declared the food was delicious and better than what we ordered for him when we go to our fave restaurants, because he could eat it all. Everything they gave him was for his soft food palate, adjusted to his medications)