@NerdMom88 is your mom a T1 or T2? My dad is T1 with a TBI and while he worked hard at blood sugar control his whole life, the TBI has affected his judgment such that he is not as disciplined about his diet. His ALF offers sugar-free dessert but they still have pasta and so forth on the menu for him to choose. And he has stopped eating as many veggies as he used to.
End result is his sugar control is all over the place. He has had a couple of morning lows, so they started giving him a snack at bed time. He is routinely in the 200âs before meals but everyone feels that it is better to just let him run high than risk a seizure from an unseen low.
What does her endocrinologist say? Obviously if we were dealing with a 30 year old person with a long life ahead, we would be focusing much more on how to control diet and insulin. But for now, the doc tweaks the insulin sliding scale about weekly, and we try to get dad to eat lower carb. However, sometimes you have to focus on the quality of life in the short term and keeping him happier.
Sheâs on insulin (Novulin 70/30 in the morning and regular on a sliding scale as needed.) Sheâs the most disciplined diabetic Iâve ever met in terms of eating â not a single bite of something she shouldnât have and very low on carbs. Itâs probably the reason sheâs still alive. Her doctor has not discussed a pump with her. Things were stable for so long and have only really bounced in the last year or so.
Iâm feeling like the worst daughter in the world at the moment because she was napping in her chair and I was working on something and forgot the time and didnât get her up for lunch. I walked by and noticed her pasty color and sweaty skin. She was down to 47 and it took two tubes of glucose, peanut butter, crackers, and eventually a hot dog to get her close to normal. (Sheâs back in the high 70s now.) It took so long for the glucose to work that I was shaky and nauseous thinking we were looking at another trip to the E.R.
@HImom â my husband is a great help when he is home, and heâs taking care of her on Saturdays so I can work. My M-I-L will be doing the same thing on Thursdays and Fridays for a few hours each day before my H gets home. Weâll be leaving her alone for an hour to 90 minutes a couple of days a week, and Iâm crossing my fingers.
This is all temporary, though. As I mentioned my work is only willing to cut down my hours for a month or so. In that space of time weâll either have to get her into another home or come up with a more permanent at-home solution. Money is an issue, as she gets upset at the thought of all of their savings going to her care (but they didnât plan for anything else!)
@NerdMom88, sometimes smaller community care homes in your neighborhood may be a more affordable solution. If you have to quit your job to care for her, thatâs a direct financial cost plus a huge emotional and other costs for you and your family.
I read these and thank my lucky stars that I never had to look at the dietary breakdowns in the dining room; Mom could have about anything she wanted as long as it wasnât loaded in sodium. And by the time the money came into the equation, she didnât connect that the memory care was costing anything. Somebody, whether friend, family or me, was at the memory care facility every day, checking on her and chatting with her; watching the activities and making sure she was as okay as she could be. The breathing problems I discovered, but we had to wait until the doctor ruled (he sent her to ER with blood clots) The bleeding problem was discovered by a friend, but we had to wait for them to call the doctor, who sent her to ER with gastric bleed, dehydration, impaction, and a raging fever But they all came on so fast. Could anything else have been done? I just donât know if there was something I missed out on noticing, but itâs too late now and I have to live with it. I do know that I did the absolute very best I knew how to do.
Compmom and Nerdmom, I wish you all the luck in the world if you take medically and mentally fragile parents into your homes along with medically fragile other family members.
I am having a pretty big issue with my dad with severe dementia right now. He is restless and agitated. He wants to get up and go, but too unsteady on his feet without a constant âspotter.â Their home canât manage a constant (yes, often 24 hours. He just spent a 48 hour period without sleep!) 1:1 ratio. Sometimes, he is sedated (probably from lack of sleep) but it then requires 2 people in order to bring him places such as the bathroom (incontinent but still has the urge to go). Weâve tried multiple medication combinations and nothing has worked and maybe making things worse with a paradoxical effect to Ativan (in the same class as Valium).
I can afford the additional expense of a sitter for a limited period of time but I donât know how long that period of time will be. And, I donât know any care situation in which 1:1 care is available.
We are planning on getting a geriatric psychiatrist (not sure how long that will take) and an evaluation at one of the major medical centers in our area. But, these appointments, I suspect, will take time to set up. I have brought in essential oils and and infuser and will make massage oils. Any suggestions of combinations of medications that have worked for your parents?
GTalum- So sorry for the continuing challenges. Good idea to involve a geriatric psycho-pharmacologist/psychiatrist who should have the expertise to optimize medication efficacy while reducing side effects. So many of these meds can increase confusion and as you say, paradoxically create more agitation. Then you have interactions. It is a lot to sort out and can involve trials.
My father spent several years in a top-notch skilled nursing memory care unit, allowing me to see how residents requiring a high level of care were handled. It was impressive that everyone was well-groomed and clean, while participation in several levels of all day long activity options was as high as health allowed. I mention his situation because the benefits of a structured memory care unit may be relevant to your father. They are accustomed to residents with his type of needs and the entire day, as well as the space, is set up so that they can be addressed. Though the unit was highly staffed, the ratio was not 1:1. However, they had excellent ways of pairing staff with the right number of residents and used the space in the unit well to keep everyone supervised and as engaged as possible during the day. Residents who were up at night were situated near the staff and one who walked almost all night usually had an aide walking along with her. They were excellent at creating calm and finessing âhot buttonsâ. Additionally, just about every physical health need could be addressed by the specialists and primary care Drs who came to the unit. As my fatherâs mobility wained, it was a huge relief to not have to transport him⊠They are equipped to go the distance with residents, including hospice if indicated. I was relieved to know that he would not have to move again.
I remember how much sense the care home made for your parents. Perhaps there is a facility nearby that would be a good fit for your father today. Even with unlimited resources, lining up daily help can be quite a task. I believe that for many residents where my father was, the actual structure and calm atmosphere of the unit optimized their functioning and mood, as did the direct care. If running out of funds becomes an issue, Medicaid will cover skilled nursing care, which can be a help. All the best as you sort this out.
We were able to find a combination of quetiapine (brand name seroquel) every night and a dose of lorazepam (brand name ativan) given when needed to work for my aunt. We gave her milk and melatonin in the evening. Toileted her at 11 pm on a commode by the bedside. I hope that you will find the right combination of meds and care to help your dad. So many elderly patients are sensitive to medications as well as the problem that most cause sedation and increase the risk of fall factor. Some medication will exacerbate the problem as you have found out. It is a trial and error. The key is finding the practitioner that is most familiar with these patients and medications, you are on the right track with a geriatric psychiatric evaluation. Safety is a key issue with your dad at the moment. Perhaps a short term placement during the introduction of new medicine regime may be necessary.
@GTalum
Agitated, impulsive, on the move 24/7, unsteady (fall risk), not sleeping ⊠These are the kinds of challenging behaviors which landed my dad in a skilled nursing memory care unit. There was no way my mom could manage him any longer at home. Risperdal and Seroquel were tried (separately) unsuccessfully, causing more agitation.
It took the home a while to come up with a solution, but they eventually resorted to switching him to a room adjacent to the nursesâ station (for closer observation and quicker response) and using a wheelchair and an assortment of alarms to alert the staff when he is on the move. While my dad was not using any walking aids (walker, cane) prior to being admitted to the memory care unit, it quickly became obvious that he needed the wheelchair in the absence of 1:1 assistance (formerly my mom). They started out trying a walker, but since he had never learned to use a one, he forgot to use it if not coached to do so. The wheelchair has an alarmed seat belt which sounds when opened along with a seat alarm which sounds if he gets up out of the wheelchair. When he is in bed, they use a floor alarm to alert them if he is getting out of bed. The staff responds quickly when the alarms sound to provide whatever assistance is needed.
Itâs not perfect and might not be a workable solution for others, but my dad seems relatively content and he has been fall free since implementing this plan. Maybe some variation could work for your dad in his care home. Good luck.
Regarding diabetes: I have been caring for my daughter for 24 years and still get up every few hours at night to check her blood sugar- on my phone. She is 3,000 miles away. For a person on the pump, there is no need to limit diet: you just do a carbs to insulin ratio. And a continuous glucose monitor, which is inserted in the tummy, sends blood sugars to devices complete with alarms for lows and highs.
I have certainly been there with reading the paper or a phone call and being 10 minutes late for a blood test when she was a child. None of that now thanks to these devices. She is 28 now but I still help her at night because she has a seizure disorder and had a life-threatening TBI and needs to sleep.
Noone in the medical community knows how to manage this disease unfortunately at least type 1.
Tweaking the algorithm weekly is very old-fashioned. In fact relying on an MD for tweaking is a nightmare, and with nurses involved that is what is required.
Until I die I will go to any medical facility with my daughter to keep her alive.
The best childrenâs hospital in then world mixed up a decimal point and almost killed her!! But more importantly, they just donât understand the disease at all.
Running an older person at 200 is probably smart. But patterns with blood sugars change all the time.My daughterâs background insulin rate changes every few hours, as does the amount she does for foor.
Tweaking the algorithm weekly is very old-fashioned. In fact relying on an MD for tweaking is a nightmare, and with nurses involved that is what is required.<<
@compmom so what do you do with a brittle diabetic then, if you donât tweak the sliding scale?
[/QUOTE]
I agree it is clumsy at best, but with a less than compliant (due to TBI) elder whose physical activity is inconsistent, Iâm not sure how to keep him in a safe range.
Thanks all of you. Yesterday was a better day with cutting back and today we will stop the Ativan. I was told âthe person we know and love is back!â It reminded everyone of a sedated caged animal who will fight harder through the sedation. We do need a solution for the sundowning and will continue to be a work in progress. There are advantages to a structured memory care over their care home as well described by @travelnut , but there are advantages to the care home over memory care. He and my mom get much more one on one attention and interaction with the staff and director and constant âtweakingâ depending on their needs. The biggest advantage, to me, is because it is a mile away, they have me and my husband involved with their care. I would have trouble not being so close and stopping in whenever I want to or is needed because mom is âlonelyâ or someone had an injury and they fortunately call me first to check and I am allowed to refuse an ER visit. I do, like when I moved them, still have the option of memory care. Once I sell their condo at the CCRC, I wonât have that option, but I will have more money for their care. We are continuing to explore all options.
The biggest problem is getting access to the gero-psych. 3 month waiting list! The only way to get temporary placement is through the ER. But, that was just a couple of calls. I have several more to call.
@SnLMom uncanny how similar our dads are. It may be a blessing in that there was no question that my mom could care for my dad. Really good suggestions. I would love him to hang out in a wheelchair but he wonât stay seated for very long. They have a video in their room and turn on a motion sensor at night (for the times he is in bed!). He is strong so he can get up, and often is down on the floor under a table checking out the âengine roomâ (he worked on planes and boats). But the central processing problems makes him unsteady. Itâs crazy how he can still get on the floor and up again but doesnât have the coordination to feed himself. I think, for him, the physical activity will be the last to go. I wish I had a crystal ball.
Again regarding tweaking. We essentially tweak the background insulin rate and the correction.meal insulin all the time. We do not rely on a doctor. If she was in a facility (as she was after her TBI) then I have to do it because nurses cannot make decisions and doctors are not available enough to change insulin rates in time for good control let alone basic health.
An insulin pump is programmable for up to 12 basal (background) rates in a day. Also, pumps can give tiny boluses to the hundredth place which is so much safer than shots.
For a person who is more stable than my daughter, the insulin Lantus is a good alternative to 70/30 and regular. It is basically a steadier background insulin without any extreme peaks and valleys , pretty steady. We havenât used NPH or regular since 1996! The fast acting insulins only last 3 hours and donât hang around the way regular does. So Lantus plus Humalog, for instance, can almost mimic the pump.
Even without a pump, a continuous glucose monitor is a godsend. You can get the blood sugars on YOUR phone, even if thousands of miles away. You get the number, a graph for 3, 6, 12, and 24 hours, arrows (even, diagonal up or down, single arrow up or down, double arrow up or down) and alarms for high, low, dangerous low, and no data.
With the CGM you could actually call staff if blood sugars were headed too far down or up. The arrows give warning. In fact, you could manage blood sugars from afar with the pump and CGM combo.
If someone is stable with an old-fashioned regimen, fine, but it there are problems, there have been so many new developments that improvement is possible.
Update on my dad. He is so much better now he is off Lorazepam. He is back to someone who smiles, does not have to be spotted while up walking around, and sleeps at night. He âtalksâ constantly though typically nobody can understand him. In the meantime Mom is losing words an in contrast to dad just doesnât talk as much. she still thinks Iâm her sister and asking me what color our parentâs new car is. Neither of us know.
Mom and dad surprising to me since they remember little about their past (and not oriented to the present at all), recalled a joint memory yesterday about how they used to live on a boat with a cat (true!).
@GTalum, I am so glad for you that your dad is doing so much better. You have certainly had a difficult journey with him and your mom. Hoping that they remain smiley. You must be so relieved!
@GTalum- glad that removing the lorazepam made such a difference.
It is remarkable how much those pockets of remembering can mean. In my experience, they were often random, apart from some stories that with cueing could be re-told up until my father with memory loss died. I appreciated those moments.
My dad is in Memory Care. The facility was taken over by a different company a few months ago. The new director requested a POLST, which we didnât have. So we met with his doctor to fill it out. Evidently the doctor is not a huge fan of the new management (and vice versa). The doctor is suggesting we look into Board and Care options. The doctor says the new company tends to insist on an outside caregiver when they feel the resident is too much of a fall risk. Which is not in our budget. There are a few Board and Cares that she visits, so he could keep her as his doctor. We will look into it. But my fear is that with his tendency to yell occasionally when he doesnât get what he wants, and his resistance to showering, that he might get kicked out of the Board and Care. I am also resistant to change. I am used to where he is and how things work⊠I think our plan is to check out a few Board and Cares, so we know what our options are and are not caught scrambling, like we were when we put him in Memory Care.
but they still have pasta and so forth on the menu for him to choose. And he has stopped eating as many veggies as he used to.