When I'm getting old

So I’m starting to get to the point where I can refer to myself as an “oldster.” I’m 73 now, and have had Type 1 for just under 60 years (60 in December).
I’m still in pretty good health. My A1c’s are in the 6’s; my cholesterol is excellent, as is my other bloodwork. We walk daily, 1-3 miles; we do stretching and a little bit of weight work a couple times a week. I’ve got a mild case of Afib, and slightly high blood pressure, but not bad.
I’ve used an insulin pump for about 20 years. I just switched over to a Tandem t:slim and a Dexcom G6 a few months ago, both of which I love.
We have no children. We live comfortably in a medium apartment (by choice, as of a few years ago). My wife has been invaluable in managing my meals and other aspects of my life. I feel like I, and we, are in good control of things right now; certainly I have plenty of experience! :slight_smile:
So my question to you is: what happens when/if I can no longer, due to physical or mental disability, manage for myself? My wife and I have discussed this recently. She is not a techno-geek like I am, and is intimidated by all that goes into managing my various gadgets. She thinks she could manage to handle giving my multiple injections, as I did years ago, but doesn’t feel qualified to manage even the pump, much less the CGM. And of course the t:slim is a bit more complicated than my old Medtronic 580. I won’t inflict that kind of stress on her.
The only alternative I see is an assisted-living place that could manage my pump and CGM adequately. But do such places even exist? It seems to me it would take a lot of high-level skill for a staffer in such a place to be able to provide that level of care. I’d hate to put my life in the hands of someone who isn’t trained for it, and I don’t think I can expect that of most facilities.
Are there alternatives I’m not thinking of? How are some of you other oldsters, especially older-than-me-sters, handling these challenges? I should be able to manage everything for quite a while, I’m sure, but eventually I’ll have to face this problem. Any ideas?
I apologize if this has been discussed, but I couldn’t find anything.
–Keith

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Hi:

I am a little younger so similar thoughts cross my mind but not quite there yet as still a very young, active 72 year old this year. My mother, however, is 98 and has her own apartment in a senior living facility and she can stay there and make her own meals and laundry or go downstairs and be fed and someone comes in once a week for cleaning and laundry and anything else she needs. The company that owns this and many similar facilities also has the next level up centers that are assisted-living.

That gives the individual maximum flexibility in how to control their own life as long as they are able to. My mother can hire either on her own or through her facility whatever help she needs to do whatever she can’t handle on her own to come in to help her out. A few of the tenants, I believe, have full time help living within their apartments, but that staff is still controlled by the tenant. Just another option you may want to consider depending on where you are living and what facility types are available but the variety just keeps growing year after year.

There are also home health options, where they send someone to your home, as often as deemed necessary. Not everyone has medical training, as some people just need someone to make sure they’re getting an occasional healthy meal and general cleaning. But complete nursing services are available, too, for more extensive medical needs. I think that option would assume that someone in the house can at least handle meal boluses and emergency hypo treatments, though.

My husband’s mom lives in a retirement community and they offer everything you need, steps up in the level of care, people that will grocery shop, clean, plant etc. You can “step up” to more assisted living if you need too.

But she is not diabetic and I have a feeling finding someone that is skilled at handling pump management would be really hard to find. They would have to be trained (on all the pumps) and have familiarity with all the pumps and also diabetes. That might be kind of hard. You probably are more able to find someone that can handle MDI shots because they can start at certain “formulas” they can follow for injections.

I think it is exciting with the new loop pumps. This will help a lot if a doctor or diabetic manager can just program the pump and let it do it’s thing. Sure you might run a little higher than you like, spike after meals more etc…but in the long run better than someone stepping in to do shots because you would have the same issue.

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Keith,
I am optimistic that looping with the OmniPod will be low maintenance. Stick it on, eat low carb and forget that you have diabetes. This is my plan.

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@Keith and the rest of us old timers:

Me: I’m 70, T1D for 48 years, G6, t:Slim X2 with C-IQ, good health (walk with the dog 3X per day for a total of 8-12 miles), no kids, my former wife is still my best friend … but she shouldn’t have to fuss with my gadgets once I no longer can.
Can you say: “Pull the plug …”.

I have a down payment on a Continuing Care Life Community and will likely move in near the end of 2021 when I will have just turned 72. A new building is under construction …

For us boomers, many of the best senior living options ALREADY have a 5-10 year waiting list that is going up by the year. Also, a number of the places where you can easily upgrade from independent living to assisted living to memory care or full-on nursing have a health entry requirement. In other words, if you wait too long you may not qualify … even if they don’t have a waiting list.

As far as diabetes management, that is a good question, and I don’t have good answers. Here is my guess: if you needed someone to change CGM sensors and or infusion sets, you could probably (but not yet easily …) find someone to do that and I expect that is a skill set that is easier to find in 2-5 years. If, however, you could no longer manage your own boluses, until it gets more automated, I’ll bet there would be pressure to go to nurse (or equivalent) administered MDI because that is a commonly available skill set.

Of course, I expect that we will all live long enough to have fully automated insulin and glucagon pumps where we will only need to worry about an occasional sensor change and fluid topoff … and the system will do the rest!

@Keith, excellent topic! I expect that we will all learn a lot …

John

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Frankly, I don’t think what you are asking about exists. Yes, there are assisted living and more facilities. But from what I have observed, no one in the health facilities, and that includes the nurses and doctors who take care of patients in them, know what the h*ll they are doing as far as diabetes is concerned. And that is double for T1.

I will be 80 at the end of this year, live alone on a large farm in rural Wisconsin, and could not even get enough home health help to keep my husband at home. He was in a nursing home for 16 months until he died beginning of this year. I watched patients there line up in their wheelchairs before meals to be given their shot of bolus insulin. I am sure that no one had any kind of insulin pump. And the shots of insulin the nurses gave were probably inadequate. I plan to check out rather than become dependent upon the health care workers out there.

My suggestion to you? Teach your wife about your pump and the CGM. Teach her to change the cartridges and install the sensors. It really is quite simple but needs concentration. Parents are doing it for their children. A wife should be able to do it for a husband. Good luck!

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69 here and I have had type 1 for 61 yrs. Married for 50 yrs. I have never used a pump and keep my A1c around 5.2. No one, not even my husband, will be able to take as good of care of me as I do. If I lose my ability to figure out how much insulin to give then I feel like I will go downhill. I hope that isn’t for another decade at least, but for me, maybe it will be time to loosen up control and let nature take it’s course especially if I have lost my ability to think clearly.

I have heart stents and plaque, so I imagine my body will fail me before my mind goes.
Depressing to think of especially when feeling so good, but I have had a good run. I will hate leaving my husband, but we realize that will probably happen.

The idea of being in a nursing home with someone else giving me my shots is terrifying to me.

Just want to add that when talking to my husband about this just now, he said that he wants me to write down as much as I can about my insulin needs, so that he can try to take care of me if I can no longer figure things out myself. This might be doable since he can look at my CGM.

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Not sure where you live but in the Boston area, virtually all of the senior living facilities currently have a plethora of available units. Do to Covid, these facilities were sealed off to the public so they could not get new tenants while some tenants moved out and others died leaving plenty of empty units. Not cheap, but certainly plentiful.

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Your wife never picks up your CGM, just to see where you are at because she is curious? Strange. I feel like I gotta slap it outta people’s hands.

Offer her a reward every time she picks up the CGM and tells you what your number is. Positive reinforcement. When your in the bathtub, ask her if she wont just check it for you. Find excuses that require her to look at it for you, like when you are driving and she’s in the passenger seat. Then, reward. Always reward immediately. People are like dogs. They learn.

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@CJ114:

I spend part of my time in CA and part in NM and had been on waiting lists in both states. While it is true that my information is pre-COVID, I do have enough contacts in several facilities to know that they have not experienced much, if any, abnormal vacancy rates due to either COVID-related deaths or mass exodus and still do have waiting lists in those areas.

Of course, there are lots of types of facilities that constitute “senior living”: my brother lives in a place that is all 55 and over … but has NO assisted living or health care. There are the full spectrum (independent, assisted, rehab care, long term, and memory care) and then there are places that ONLY have some or all of the higher levels of care, and certainly have no independent living.

It is certainly tricky.

I apologize if I overstated the waiting list thing … I’m sure you are correct that not all areas have waiting lists and they ARE building new facilities all the time. Finding good staff for all senior facilities is an issue.

In this case, I like doing my homework before having an imminent need. I’ve certainly been to places that seem nice enough on the outside … but things seem not so good once you walk around and get a feel for the place.

Stay safe!

John

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Fellow “experienced” T1Ds:

After reading @Willow4’s sobering assessment of how things really work in many facilities, I was able to find the 2019 ADA position statement on treating diabetes in older adults: Word of warning: DON’T read this if you don’t want to be seriously disappointed! For everyone here who has been successfully self-managing this for many years, you will likely be dismayed at how minimal the standards of care are. And this from the ADA!

While I don’t like having to share this, I’m hopeful that it will encourage each of us to keep doing what we are doing for as long as possible and then hope that we each have a fallback position.

I am hopeful that are enough of us successful T1Ds that will move into senior facilities sooner or later and that WE will help to raise the expected standard of care …

Stay safe out there.

John

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I got good and useful information here thank you so much for your information, i am always glad to be here.

@Willow4, I’m in Minnesota, so if you ever need help, have someone reach out to me. It’s not that far. Its a beautiful drive across Wisconsin.

I kinda agree with Willow’s position. Although, I recognize how hard it is to ‘train’ someone for diabetes care. You really need the right person. They need an inclination in that direction. I will add one depressing complication. I spent years training the perfect diabetes caregiver and that person dropped dead expectantly. There is no replacement. During covid, the best I have been able to come up with is a special ‘diabetes emergency box.’ If all they do is bring that box to the hospital, that will be good. It contains an ‘emergency folder,’ with emergency care information. It is many pages long and will be confusing. I have instructed my brother to reach out to you all in an emergency with any questions.

I appreciate what you are trying to do.

My question might be - In the case of a caregiver what, exactly, are you hoping to achieve? A specific a1c? Feeling good if you end up in managed care? Not feeling awful and sick everyday in managed care?

I don’t think that you are going to be able to maintain a pump under certain circumstances. Is there any way you could imagine yourself living a pleasant life on manual injection?

I just need to ask this question because of the nature of the reality that we live in and options available to us. I think that you raise good points. But, has anyone ever managed an insulin pump on your behalf to an adequate degree? Have you ever had a Doc set your pump settings? Do you even believe that this is possible? I guess that I am not sure that I do.

Yes, I have considered going back to MDI when CIQ had me at my most exasperated. It would probably be a much more relaxed existence. I spent many years on MDI.

My CDE once tried to set my pump parameters. And it was a disaster. Irked me no end. I won’t let anyone touch my pump. Ever.

BTW, thanks for your offer of help. I appreciate the thought.

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Thanks for raising this question, @K_Hjalmar. At 67, I’m a few years younger than you and have lived with T1D for 36 years but still face the same daunting prospect. When I moved to the same city as my adult daughter, I harbored some hope that I might be able to hand off enough diabetes skill (pump and CGM) to her so that at least she could be informed enough to influence better diabetes care for me.

I started to develop some basic diabetes written material that I think provides an essential foundation to managing insulin dependent diabetes. I covered topics like the metabolic nature of insulin and food including the topics of basal and bolus insulin. My idea was that she could slowly learn this material over time.

My daughter soon shared with me that she was intimidated by this task. She knows the competence I hold managing my diabetes and she doesn’t think she could ever rise to step in and help me. I didn’t want to push things so I just left it at that.

I don’t feel much hope of any institution managing my diabetes well. Even the endocrinologists and educators do not understand my diabetes like I do. They seem more focused on standards used to treat a population and less interested in treatment tactics specific to me.

These practitioners are at the top skill level to address my daily insulin management and even they fall well short of the task. How can we expect the marginally trained and poorly paid senior living center staff to ever be able to help us?

I think I need to make peace with the idea that if or when I lose my cognitive ability, I will drop into poor glucose control and be vulnerable to the many things that could kill me. This is the classic situation that the elderly have always faced but with a diabetes spin on it.

In the meantime, I will use that fearful prospect to do everything in my power to mitigate my cognitive decline. In the last two years I have made significant health gains improving my sleep, diet, and mindfulness practice. These are the things I can control now. I need to let the future make its own track and accept its course. I don’t know any other viable options.

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Recently mohe0001 remarked:
Your wife never picks up your CGM, just to see where you are at because she is curious? Strange. I feel like I gotta slap it outta people’s hands.

Hmmm… do you mean “pick up the receiver”? I’ve never used the receiver; I get everything on my iPhone. I could share with hers, I think, but she relies on me to keep track of everything. She’ll sometimes ask me how my level is just before a meal, but that’s about it. All of which is fine with me.

–Keith

All:

I think the good news is that many of us did quite well for many years with far less technology than we have now: long before BGMs, A1C, much less pumps and CGMs.

It does seem, however, as we may have to prioritize. For me, I would gone up my pump in a heartbeat if I could keep my CGM. The good news is that with 10- and 14-day sensors, there is minimal “fussing” and just about anyone could look and see a current glucose value and the trend.

Of course, I suddenly realize that every month, Dexcom asks the question “Are you in a facility?” That makes me wonder to which the decision to use CGM is taken out of our hands once we cross a certain threshold.

Stay safe out there.

John

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You are unfortunately right that Medicare does not cover Dexcom if you are in a “facility.” I don’t know about pump supplies because I can9t remember whether I answer the facility question when I am ordering supplies for my pump. Like everyone else, I am hoping to stay healthy enough to stay home And in control of my diabetes for as long as possible.

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@Laddie That’s nuts right? I think Medicare hasn’t been covering Dexcom for too long as it is. Wow how much easier for a assistant to come in and go they are at this level. On the other hand, the reason is strong as to why not. Someone comes in and sees a patient at 400 and gives a correction and you aren’t really at 400…

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