Parents caring for the parent support thread (Part 1)

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11521

Love siblings who visit twice a year then tell you what is really going on. I figure that mine needs to feel important due to distance, and that guilt is a factor along with a certain cluelessness. I try to just thank him for his" insights" but there certainly have been moments of friction, and needed ones at that.

This CAN be a problem when decisions need to be made by consensus but otherwise, I have learned that the infrequent drop-in sibling is such a common issue that it doesn’t bother me anymore.

11522

@gtalum, I really feel for you, having lost your brother suddenly just as things were getting more complicated with your parents. My brother passed away a bit more than a year after my dad. I can’t even imagine how it would have been if he had died before.

11523

My brother was diagnosed with Alzheimer’s before our mother passed away, but they continued to have several daily phone conversations that lasted almost as long as it took the phone to ring (“How are you? I was just calling to check on you. I love you. I love you, too, 'bye” When she broke her arm and went into the memory care unit, I got her a cell phone but she never realized it was ringing and wasn’t interested in calling him. He has forgotten about her, and we never told him she passed away. I can be thankful for that because his two grown children trust me and it was much easier to get through her small estate.

11524

Any words of wisdom/experience for me?
My 97 year old mom has lived in assisted living for several years. They are very attentive and every single time she has needed medical care, they have been right on it. My brother and I live 300 miles away, but each in exact opposite direction from her i.e. he to the south, me to the north.
This morning they found her with “altered mental status” and got an ambulance. Diagnosis: transient ischemic attack or mini-stroke. She was back in her room and by night time was doing well and responding appropriately and with vim. I spoke with her as did my brother.
We have a cousin and his wife who look in on her routinely and they were with her.
Now…naturally I wondered…should I trust this process and see what happens or OMG, should I jump in the car and go to her with every incident, which is of course what I would do if I lived locally?
If you had this scenario, how did you handle things when they started to dip a bit downhill? The reason she is in assisted living is such a this. We can’t be there. Previously, once when she was hospitalized, I went right away of course. I guess you have to kind of follow your heart and judge each thing as to how serious it is each time?

11525

@VaBluebird I think you have to follow your instincts and judge it each time. I feel for you and I am sorry that your mom experienced a stroke.

Since you have a cousin and his wife to help out looking in and being with her then it should give you piece of mind. Is there a reason she is in assisted living 300 miles away from each of you? Is there a way to move her to one near you or your sibling or is that AL really superior because if it is you may want to keep her there? The reason I ask is because once someone has an ischemic stroke they are likely to have more of them or perhaps a hemorrhagic stroke. Ischemics are a deprivation of oxygen to the brain that is caused by a blood vessel blockage so there is something going on. With strokes I found that the more you have the worse it gets and then you have to make additional decisions in a short time frame and crisis mode

11526

She won’t move. Refuses. I’ve begged her for years to come live near me.

11527

@VaBluebird Yeah. I thought so. What can you do then right? In that case I think you have to take it time by time

11528

@VaBluebird, I would trust the process. I would not go to your mom for every incident. It sounds like whoever found your mom this morning did the right thing (summoned an ambulance) and that the rest of the response was appropriate (getting her checked and making the diagnosis). I think that having a TIA does mean that the person might be more likely to have a massive stroke, but you being there immediately after the TIA wouldn’t of itself have any effect on your mom’s chances of having a stroke.

My dad had one or two TIAs before having a stroke. I think we visited him when he was briefly hospitalized after one of the TIAs but he lived nearby (50 miles). He did end up having a stroke a few years later, and it was diagnosed almost immediately.

11529

@VaBluebird , you do what you can and then trust the process. If your mom still fits within the boundaries of the AL and can continue to live there, then that’s probably as far as you can get.

When my H’s grandfather was by himself in FL (after GM’s severe Alz and then passing, there wasn’t a relative close. My ILs and FILs 2 siblings each visited once per quarter for a week-10 days at a time. He was happy to see family they were reassured with the ALF. He was fine.

My FIL had a number of TIAs when he was in his late 70s/early 80s (he’s 91 now). Dementia, but no major strokes. It was frightening, but he got over each one fairly easily, and they eventually stopped.

You know your mom won’t move, so take comfort in knowing you can reach her in an emergency, you have frequent communication with her, and the ALF is handling things appropriately.

11530

IF your Mom has the executive function to rationally refuse to move, you can let it go and let her be happy in the place she likes best. If her condition degrades, you can choose to override her desires if the need to be close to you becomes more important.
It’s not easy, but sometimes it has to happen, though hopefully she can enjoy a longer healthy time where she is comfortable. As long as she is not expecting you to drop everything and come be with her, it seems reasonable, but yes, there can come a time that you overrule her wishes.

11531

My mother is in a well-regarded assisted living facility but they are not really able to do much for her, partly due to regulations. I think my brothers and others in her life overestimate what AL’s do. Social workers, the ombudsman and a consultant who I have talked with all agree with me: don’t expect too much from an AL.

Last night my mother had a second fall involving bumping her head. The second one was due to dizziness from the first one. (She is doing vestibular and balance therapy, which I take her to) Her right hand’s arthritis is so bad it can’t function, so she can’t eat well, write, get dressed or even wipe herself. Ir is hard to use her walker, because her hand hurts too much to hold it. (Taking her to a hand specialist this week, giving her PRN prednisone which AL says they cannot do.)

Last night she was shaking really badly and crying and saying she was so scared. I kept wondering: does this happen when I’m not here, and she is all alone? She called the nurse while I had stepped out to track down her meal (which had been lost) and the nurse (all the nurses are LPN’s,some from an agency) spent about two minutes with her since she had meds to give out.

I fed her, got her dressed for bed, put her in bed, put the walker near the bed, and set everything she needs by the bed: drink, gum, book, etc. Changed the bed pad, did the dishes, cleaned the toilet.

I didn’t otherwise see staff from assisted living at all in the 4 hours I was there, except at the very end when an aide came to give her meds. It was hard to drive away.

We pay a lot of money for this. I really don’t know how any of this can work with no relatives around. I love the staff and facilities are beautiful, but I have been led to believe, and believe, this is how AL works. We could hire a private aid but to save money, it’s me.

I’m curious: do some of you actually deal with AL’s that do a lot of the work?

11532

@compmom- AL varies in terms of what they do and the type of licensing they have. Some are a “cruise ship” model with meals and activities offered in the context of expecting almost complete ADL independence. Others help with a shower 1-2 times a week, morning check in, etc. Some allow for add-on fees for personal care assistance. With this model, some places will have staff hand residents meds (that family has filled and brings in) on schedule, but they may not be authorized to administer meds directly. Others, like the one my father was at, had a strong medical component, ordered and administered meds, could monitor vitals, treat a virus or illness, do wound care, provide some ADL assistance, etc.

Of course, the non-medical ALs may be “outgrown” a bit sooner than the medical ones, especially if family is not nearby to run interference. Even the more medical ALs do not have the robust staffing patterns of skilled nursing facilities. My friends who are AL directors observe that people are coming to AL in a frailer condition than they used to and attempting to avoid SNFs for longer. This may put extra burdens on the family, as well as the facilities.

Agree that if our elders are fully competent, we can only do our best with the parameters they set. However, I would not hesitate to articulate the impact of their choices on my family and peace of mind, as well as the unintended ways my ability to be a resource were diminished. The drop and run model gets old fast and not being able see the situation and have ongoing relationships with care providers is a big hindrance in my experience. That said, there is a time when the desirability of pro-active, aggressive medical care no longer exists and there MAY be fewer day to day judgment calls. It’s a very personal thing; just would not feel apologetic for endorsing a plan that worked all around and seeing if it could be implemented over time.

11533

@VaBluebird The situation may become so hard/unmanagable from afar that you may have to take different action. I remember after the first Ischemic stroke I thought the situation was manageable but then came additional strokes of both kinds and those incidents pushed us in a very different direction

11534

She’s doing fine today. I called her and cousin went to check on her. She was hungry for lunch and planned to play bingo his afternoon! Whew! I can relax a bit. But man it’s tough being so far away from her.
Thank you for all your support and thoughts and advice!

11535

Glad your mom is OK @VaBluebird. My parents are a mile away and I am grateful. But, if they were cognitively able decisions, and they were in a place where their needs were met, I would just deal with such a distance. For now, having them close allows me to avoid ER and hospital visits.

11536

Wow @compmom , my mother has bad arthritis in her hands and cannot do many things, push a button on the microwave, pour water from the electric kettle etc., she can dress herself in many items, but not zippers.
She also did a session of PT for dizziness, no fall, just dizzy, and she is too exhausted to go back so I’ve had a person coming to her, but it really interferes in her life.

My mother lives with us and my siblings have told me a few times the last couple of (rough) years that it’s ok to put her into a home, that I’ve done enough. They don’t understand that a home is not a panacea, not a cure, it’s just a change. It would be nice to be able to do overnight things without stressing coverage, but I really don’t want to be driving to a home (likely 45 minutes away) daily. We put my in laws into IL/AL/SNF/B&C/Hospice over a couple of difficult years and it was definitely not a cure all.

I just hope we can keep my Mom strong enough and safe enough to remain with us!

11537

Can anyone recommend an adjustable “TV tray” type tray? Not the typical TV tray but one that can slide under the sofa so my dad can pull it pretty close to him as he sits on the sofa.

I’m thinking the tray should be adjustable because his sofa may be lower.

This would be for occasional meals or snacks or drinks.

11538

We used a hospital tray table provided by hospice for both my mother in law and my dad. They were very handy. Used at an easy chair. For a couch you would want to make sure the tray could rotate to where you need it while the base was under the couch.

Something like this. https://www.walmart.com/ip/Silver-Spring-Adjustable-Essential-Overbed-Table/356413263?wmlspartner=wlpa&selectedSellerId=1201&adid=22222222228075719160&wmlspartner=wmtlabs&wl0=&wl1=g&wl2=m&wl3=188334362551&wl4=pla-294491293417&wl5=9031024&wl6=&wl7=&wl8=&wl9=pla&wl10=112561859&wl11=online&wl12=356413263&wl13=&veh=sem&gclid=Cj0KCQjw_7HdBRDPARIsAN_ltcLZIMy2cfWr573WJCzi2nvrAYn7dhaghyO9J13m1i-ealf1cId6l9kaApf-EALw_wcB

11539

While it is nice to be able to drive away, it is also stressful and noone understands that in my mother’s case, it would actually be easier living with her. She isn’t availing herself of services, doesn’t do activities, and stays in her room except for some of the meals. My brothers and I do decisions together although they rarely see her :slight_smile:

The drive each way is 30 minutes, not too bad, but she is lonely and hurting and I think it would be better to be with family. (I don’t have a house at this point, I would get an apartment with her).

Today extra prednisone sent her INR skyrocketing so Coumadin was cut. When I asked the MD about adding some extra prednisone yesterday, he didn’t mention this effect. I have to give PRN prednisone because regulations prohibit the AL from doing it. I keep it in my car! Now, if her hand swells, I will give extra prednisone but call the anticoagulation clinic to let them know so they can test her and/or advise the AL and their pharmacy on dose cut. It’s so complicated. If she were with me, I would just cut Coumadin when she takes extra pred.

The hand specialist facility called her by mistake this morning and she was mixed up and told them she was having therapy at her apartment. I called them and rescued the appointment and asked them to call me!

Anyway, hats off to all of you who are caregiving in your own home or your parent’s. I am in my apartment by myself under a quilt with no responsibilities at the moment, and have lots of moments like this.

11540

^ I’m a little jealous of that last sentence! I still have to do mom’s bedtime routine, which includes giving meds, pushing more fluids (she hates drinking anything), bathroom duties, changing clothes, getting her to her bed, and tucking her in. She likes to stay up late and sleep in late. When I had to visit her in rehab/nursing home, it seemed like I was always in the car driving there and back. And she was so miserable when I left, it was gut wrenching.