Should an insulin dependent diabetic with dementia live alone?

You can also look at board and care homes, and I was thinking there are waiver programs that let people stay in their own homes with some (but not full time ) support, but if Mom won't accept someone coming in to give any care or manage meds that is not going to work. You may have to look further away that you would like, maybe in a smaller town or more rural location, and be prepared to contribute part of the costs yourself (but be realistic, avoid going into debt or doing something you really can't do long term.)

Keep looking Lesanne. I would keep in mind though, that residents in a Memory Care facility are often asleep or appear to be asleep, because of their dementia. That is how they are. The only option is for them to stay in bed. Most places that I know get the resident up and into a geri chair during the day, if necessary so they can have some mental and physical stimulation. I have seen residents in that condition in every facility I have visited. Even upscale facilities have patients in all stages of dementia. It's the progression of dementia. If they survive, our loved ones will likely become that way too. It's not likely to find a Dementia Unit where everyone appears happy and healthy, because if they were like that, they wouldn't need Memory Care.

I would also keep comments from a dementia patient into perspective. The resident is there because they have dementia. I think a more reliable source might be the family member of a resident. They could relate to you what their experience has been.

Did you find out if these places administer insulin?

Yes, Lesanne, there has to be something better, and you'll find it.

My husband and I went to visit two ALF's that accept Medicaid yesterday. The first one was the most Horrible place I've ever been in. Everyone there looked as if they would rather be dead. Sitting in wheelchairs staring at the walls, or asleep sitting up. I was approached by a 92 year old woman telling me "you shouldn't put your loved one in here, it's hell"! The nurses seemed to be ignoring the residents. The memory care unit was like something out of a horror movie. They had s separate dining room for the memory care residents. When we walked in about 10 people age 80-100 all in wheelchairs, all asleep! My husband walked in, walked right back out all teary eyed and was fighting back the urge to throw up.

I know she should have planned for her retirement and eventual aging care but she didn't and now she has no money. I can't feel sorry for her but I am also not cruel! How in the heck am I expected to leave my MIL in a place where I wouldn't leave a stray dog. Yet I can't afford anywhere else.


The second place was better but again every single resident was over 80 and they had no secure memory care. There has to be something better.

Lesanne, Reno is right. Just being oriented and recognizing familiar people and remembering stuff from 50 years ago does not make her cognitively OK, let alone able to make good decisions or understand why she needs care. They are probably not going to let her cook in an ALF either, even though her retaining all her physical self care abilities is a big plus too. Does she need cues and reminders for that though? If she does not now, she may in the foreseeable future. Maybe ask specifically about "memory care" options too.

Hi. You cannot "convince" someone with dementia to do anything. They have lost their reasoning capability. Please get your mom in assisted living or skilled or you will be dead before her. She does not have stress because she is clueless. Meditation is a great bandaid for your stress, but that is all it is, the real issue is getting your mom the care she needs even if is not what she exactly wants. Older people do not want to change and they are afraid. I have read many posts about parents who fought assisted living yet once they got settled in they liked all the people and activities

Babalou, I have not tried meditation yet but I am interested in trying it. Sorry to sound stupid but Is there an actual technique to it or is it just sitting in silence and breathing? I was going to try and find a yoga video on Youtube because I need the exercise and have heard that is especially good for stress. The ironic thing is that the problem with my heart is that it does not relax between beats. Which sounds just like my life.

I am trying to distance myself due to my new heart condition but my husband is having panic attacks and high BP so I have to think of him also. We met with the Medicaid Case Manager yesterday to discuss additional help or services and she felt like my MIL needs to be moved to Assisted Living in a facility that can monitor and administer her insulin. She didn't think Nursing Home would be a good fit because my MIL is perfectly able to cook (from memory), bathe, dress and go to the bathroom completely on her own. She still has all her long term memory, she knows exactly what date, year, and time it is. She has no trouble recognizing all her family members, her aide, her friends. (she has some trouble remembering doctors). But the problem is that she has absolutely no short term memory longer than a few hours at best. She is now intellectually on the same level as an 8 to 9 year old child (a very forgetful 8-9 year old child) she can't handle money at all (has trouble even counting cash) she cant pay bills or open, organize, and understand incoming mail. She can't comprehend anything more than very basic instructions. She can not follow written directions of any kind (such as a recipe). She has no ability to learn anything new. She can not calculate her insulin doses on her own. She is beginning to forget basic things like how to dial the phone or how to turn on the vacuum. She is begining to have depth perception issues. She tripped over a curb on last sunday and almost dropped a detergent bottle on her head at the grocery store because see didn't see where to grasp the handle. Emotionally and socially she acts like a 12-13 year old, argumentative and seems to have lost basic manners. She was raised a southern belle who has ALWAYS said please, thank you, yes ma'am, yes sir and now she just says "yeah" or "whatever". She is completely unaware that she has any problems at all, and denies all examples of her memory loss or other deficits. We are going to look at facilities this weekend. So now we are faced with having to convince her that she needs to move to Assisted living. How do we do that and still manage to keep our stress level down? BTW... thank you all for reading to my long rants and giving me your feedback. I find that it just helps me to get it all out on here so I don't unload it all on husband or our 20 year old daughter who is now being effected by all this as well.

Lesanne; I just read your other post, that you've developed a heart condition and need to reduce your stress level. As hard as it may be, I think you need to disengage from day to day responsibility for MIL and let your husband step into the breach; he needs to find her a placement.

Have you ever tried meditation? Some community colleges offer Mindfulness Mediation classes; they are a great way to let go of some of the stress.

A person with dementia should not be allowed to live solo, let alone her other issues!

I agree, Reno, I'd be not too confident about assisted living being the appropriate choice. It might be worthwhile to talk to one or two, laying all the cards on the table and getting their reaction. Lesanne, the marketing people aren't always the most knowledgeable about what services can really be offered, so if you do find an AL that seems appropriate, talk to the DON before you go any further. He or she will give you a realistic picture.

(My daughter works at an ALF. I recall her being upset one day because when floor staff looked at the care instructions for a new resident it said she was a two-person transfer. "But we are not staffed for that! We are licensed for that! We don't do that! How are we supposed to work this in to our regular duties for our other residents?! Fat lot of good it does if they are charging more for this service, if we don't have staff to do it!" Etc., etc. The people who actually do the work were none too pleased how marketing had sold this contract. Which is why it would be good to talk to the director of nursing before getting very far with serious consideration.)

Lesanne, you are right - hubby et al are not seeing that keeping her "happy" by doing things the way she says she wants them done is not working out so well, unless it means she goes to Heaven sooner...and she could be happier here on earth if her medical state is improved!

Go with a nursing home. Her diabetes requires skilled care. Many assisted living facilities (even memory care) do not administer insulin. Someone with her prognosis should not be so tightly controlled that hypoglycemia results. A facility can manage her insulin and her diet (which hopefully would not be as strict as a younger person). A high blood sugar will not kill her-but will contribute to complications like blindness. A low blood sugar can kill with a fall or precipitate a cardiovascular event

It might be wise to try to get her to a geriatric psychiatrist to document the dementia. And make sure if you can, that anybody that sees her is at her least showtiming time of day.

Well either one of two things will happen. She will have a diabetic crisis which will force her to seek medical attention, and/or she will have another medical crisis. Either way she is playing Russian roulette and unless you have POA/MPOA for her, there is not much you can do. Continue to encourage her to have someone help, but if she does not want the help, there is little else you can do but pray for her.

NJCinderella, I'm sorry about your mom and that your dad can't see that she needs more help. Dehydration is an issue for my MIL as well. CaramK, Her doctor has already filed a form with medicaid stating that she is unable to make her own medical decisions, and the POA that she signed does allow for us to make her medical and financial decisions. RE: her insulin, she takes it after she eats because if often takes her an hour or more to eat a plate of food. This was recommended by the Home Healthcare Nurse back in May. At this point it really doesn't matter because shes not remembering to take it at all sometimes. We manage to keep it around 100-130 during the day but some days we take a 120 reading and two hours later its at 320. She is a closet eater and we can't stop that while she is living alone. She stays up all night long eating and often her meter shows readings of 190-220 at 3:00-4:00AM. I believe that Jmitch is right that her highs and lows are contributing to the dementia. With the help of this amazing forum, we have pretty much come to the conclusion that we have to move her to a facility right away. She will hate us for it but in the end It is the only thing we can do to keep her alive.

Her memory might be worst because of the uncontrolled blood sugar levels. Has anyone mentioned that?

One thing to consider, especially with short term memory loss, is that all information is new information and she is trying to compensate for that with all these behaviors. Check with some of the assisted living facilities about whether they accept Medicaid for assisted living or if they know of a facility in your area that does. That facility's admission personnel can explain the process and assist you. Not sure the state you are in but here if some one has capacity to make their own decisions the MPOA is not ineffect. Meaning you have listed someone to act as the agent to make medical decisions when you don't have capacity to do so. If the medical provider indicates she has capacity, she makes the decision whether to go to a facility or not, not you. Perhaps request further evaluation by the provider or be referred to someone who can do this for her. Good Luck. Also, short acting insulins are usually prescribed 15 minutes prior to the meal, not after.

even with full time care, my mother who is now insulin dependent after years of neglecting her type 2 diabetes and eating whenever, whatever she wanted, still wont get on a schedule that is healthy. You cannot make someone eat. You cannot force someone to comply or get up, go to sleep on time etc. I tried to force her to drink a diabetic shake and she refused to open her mouth. now what? She sleeps til noon, gets up has a terrible carb packed breakfast, gets tired again in an hour and sleeps again until 5pm, maybe will eat something and goes back to bed at 8 or 9. I don't think she has more than 1 glass of water all day. Last time she did this behavior she wound up in diabetic shock and was near a coma state. Now its 2 yrs later and she's starting up again. Honestly, I think your MIL needs to be in a facility that will force her on a schedule, give her her insulin and make sure she gets healthy meals. They know the warning signs of trouble. I wish I could convince my father to do that with my mother but I think it will take another crisis to make that decision for him. don't wait.

Over the last few days my MIL has become more and more difficult and argumentative. She is refusing to answer the phone and leaving when she knows the aide is coming. She told me again this afternoon that I need to fire the aide. She said she has told the aide over and over to stop coming since she doesn't need her. I tried to gently tell her that the aide comes for her safety but she yelled at me until I cried (which I don't normally do) that she does not have a problem and always remembers her meds and insulin. I asked her if she recalled ever having this conversation before and she said she thought she might have mentioned firing the aide a month or so ago. We have had this exact conversation every single day, sometimes 3 or 4 times a day for about two months now. :(

I got an appt with the Medicaid case worker for this Thursday. So that's good. Maybe she can guide us to the level of care she needs and help us find a facility that accepts Medicaid. We are not financially able to help with the cost of AL or SNF.

My husband and I spoke further and after the last few days he is now in agreement that AL or SNF is needed. Keeping her in her home would be great if she would allow the aide access, but she is forcing our hand at this point.

To answer a few questions... We have full POA in my name and my husbands equally for medical, legal, financial (everything). I am the joint account holder on her checking account (which I need to lock her out of) She has no assets, other than her old battle tank car (that I guess we need to sell). She does not own a home. Has no savings.

I honestly don't know how many of you have dealt with this so long! I am in awe of your patience and compassion. It's only been eight months for me and I feel like I should be in the fetal position, in the corner with my crash helmet and drool rag! LOL

Thank you all for your amazing advice. I have noticed a difference in myself in the last few days just from sharing my thoughts and concerns with this wonderful group.

If it helps any, a lot of SNFs look and feel more like ALs these days and if she is medically complex like this she can probably qualify for the SNF (nursing home). Now, if there is some chance of the POA being given to someone else who does not see what you see or who would take advatage of her, you probably need to look at guardianship. Document everything that is happening and get a different doctor to do a decent eval of her cognition, and don't settle for a mini mental status when she can make her best effort and showtime her way through it.

The answer to your question as stated is "it depends on the person" but in this case, the clear answer is no, she is way over her head in trying to manage, and she will never have enough judgement to recognize that what she wishes were true is not true. She might do a little better with better medical management, but over the long run this is pretty clear cut vascular dementia and diabetic encephalopathy, well beyond MCI, and will progress. She is not doing the things she is supposed to because she CAN'T. Unless she has an option for a live-in, start looking to pick a good facility for her. Not too much further down the road, you will possibly be wondering if you can sell her home and set that up in trust (e.g. Miller trust or similar) to pay for any care that Medicaid does not cover - absolutely at that point get eldercare legal help so anything you want to do is done correctly, because there are many rules about gifting and estate recovery that will come into play that vary from state to state.

Hopefully you can keep her from driving....

irishboy, your information is correct in some areas. Other localities do have Assisted Living facilities that accept Medicaid. Sometimes they must be private pay for a specified length of time. In other cases they are accepted with Medicaid from the beginning.

I don't know if AL is sufficient in this situation, but I just wanted to point out that what you have found to be true in your area is not necessarily true everywhere. If AL would be the best place then it should at least be investigated.

I don't believe if someone is Medicaid that they can go into an Assisted Living facility.

They can go into an SNF/NH but AL are private pay places. There may be a couple of AL that might take a couple of Medicaid cases, but I believe that is usually are people who have been in the AL already were private pay and their funds were deleted and they were allowed to stay on.

But someone who just got on Medicaid has to look at SNF/NH to go to.

I don't know about Florida long term care facilities. I would check to see how their facilities work. Nursing homes are generally for residents who need skilled long term care. I'm not sure if taking insulin comes under that category, but you can inquire. Most assisted living facilities here have Medication Technicians who administer meds to the residents per their doctor's orders. They also bathe, dress, feed and do all the things a resident needs to have done. They have a dining room, social activities, recreation, etc., to keep the residents active and involved as long as they are able.

Does your family understand that it is progressive and that most patients will lose their ability to walk, talk, eat and that they become incontinent?

If you can locate a Memory Care facility, they should be able to guide you. In most states there is a state FORM that the doctor completes and signs that says what services the patient needs. Such as do they need help with bathing, laundry, feeding, medication, etc. Most facilities need that completed form to process the application, but a Memory Care facility should be able to go over it with you. That form may have been completed with the Medicaid application. You can check. Discuss with the Medicaid case worker. Confirm she understands the huge issue with insulin and her inability to properly manage it.

You said that you have POA, right? It sure would be difficult to fight family members who are not taking the risks to her safety seriously. But, if the doctor is concerned, he can forward it to the right department for an investigation. If the family won't protect an at risk person with dementia, then the county will step in, especially if the doctor reports it. I hope they will support you in your efforts to get her help. If they would read a lot about the disease, it might help them. Remind them that dementia patients are often not happy. They get scared and anxious as their brain is changing and they get confused easily. Depression and anxiety are common with dementia patients. I might sit down with a list of the crisis your MIL has experienced and discuss it, along with her inability to manage anything in her life.

Sunnygirl1, I've never heard of Memory Care Assisted Living, We are in South Florida "the elderly capital of the world" LOL, so there have to be facilities available. I will check that out immediately. Thank you!

I am having trouble convincing my husband, our grown children and my MIL's brother that this is the right thing to do. They all think we should just let her live alone with an aide coming twice a day because she doesn't or can't see that she is ill and they don't want her to be unhappy. They also believe that she will decline faster if she is unhappy. They see the danger but they are putting her happiness before her safety in my opinion, and ultimately the decision will be my husband's and her 70 year old brother's.

Lesanne, it seems you are doing all that you can. Getting her Medicaid is a great start. It works differently in each state, but in my state, the facility will accept the amount that Medicaid will pay for her. That's all they can charge and they can't charge her anything over that pre-set amount.

However, they will only allow her a certain amount each month to keep as her personal funds. So that her monthly check will only be $50 or $66.00 or whatever your state allows. She then has to use that for all her out of pocket expenses like clothes, toiletries, etc. But, if she is living in a facility, that shouldn't be too much of a problem as her overhead will be low. I would check with an Attorney on the matter, but I would be careful giving her monthly money as it could disqualify from Medicaid or some benefits. Maybe those who know more about this will chime in with their tips.

I would use her doctor to get her into a facility, probably Memory Care Assisted Living. See if the doctor can convince her. It's often difficult, but there are ways to persuade, keeping in mind that her brain is not functioning and her ability to reason is damaged. See if her doctor will say that she has to go for some kind of insulin training or medication adjustment. I can't imagine anyone knowing the facts here, not seeing how risky it is for her to live alone and take insulin. If the doctor understands dementia he should step in on this.

I would focus on the most pressing issues first. The facility will monitor her meds, so let them deal with that. Her doctor should prescribe what she needs and that sometimes takes some adjustment. They will also control her meals and snacks. As far as Cpap goes, it's a great thing, but for people with terminal illness like dementia, it's almost impossible to use. You can explore that with her doctor after she is somewhere safe.

I would keep in mind that just because a dementia patient may seem to be thinking clear one day, the next day could be much different. Their abilities fluctuate a lot.

I would immediately locate Memory Care Assisted Living facilities that accept Medicaid, confirm an immediate opening and tour it. They have reps who can explain a lot and answer questions. Don't volunteer to pay anything. That's what the Medicaid does. What state are you in?

My cousin was 62 when she had to be placed in Assisted Living. She was not able to take her own meds or care for herself at that time due to dementia. She wasn't keen on the idea, but the doctor and I convinced her to go. I know it's extremely stressful. I wish you the best of luck.

Her financial situation is terrible. Her Social Security does not cover her monthly living expenses and we have to give her about $250.00 just for food & utilities. I just got her approved for full Medicaid so now she has Medicare & Medicaid but I am still unclear on how much they will cover for assisted living or a nursing home.

We do have a POA for health and Financial matters. Thankfully we got that just after she was released from the hospital. I pay all her bills for her via her checking account. She still has access to her checking account and keeps spending the bill money on QVC and Home Shopping Network. She has also started spending double the normal amount at the grocery store.

How do we tell a 65 year old woman that she needs to go live in a nursing home when she truly believes that she is perfectly fine? She is in complete denial. She will tell anyone who will listen that she is happy, healthy, always eats healthy, rarely eats carbs, keeps a tight control on her diabetes and swims laps every single day for exercise!

The reality is that she eats junk, goes to the pool about twice a week and sits in the hot tub (not swimming!), the rest of the time she sits in her LazyBoy recliner. She will not clean her apartment or do the dishes, she has expired food in her fridge all the time. Sometimes she looks like she hasn't showered in days. Her sugar is all over the place, Her A1C is 7.1 she is obese at 5'2, 250 pounds, she has sleep apnea and can't keep the mask on, she is Hypothyroid, High BP, High Cholesterol, has Arthritis in her hands and lower back. She had 5 way heart bypass surgery 10 years ago and never changed her lifestyle. She was addicted to pain pills and xanax until we took over her medications. She is still getting xanax and pain pills from her "friends" which is making the dementia worse. So basically her health is TERRIBLE for a 65 year old.

I know I keep rambling... I'm Sorry! I'm just so frustrated and emotionally drained!

No we don't have proof of the insulin overdoses. The ER paperwork the first two times just said hypoglycemia. This last time they diagnosed unknown seizure disorder. She had been passed out for about 10 hours before we found her so any insulin that was in her system was probably gone by then. But she had super high doses of Gabapentin in her system which could have caused a seizure or coma. The doctors still don't know the reason. All we know is she had no memory at all when we found her. Not even her own name. It was terrifying!

Thank you all! I wish I had found this forum eight months ago.

I showed my husband all your comments and he finally understands that moving her to assisted living is not abandoning her, it's saving her life. I will be calling the Medicaid case worker first thing in the morning.

Sunny girl, she was not this bad when she was released from the hospital in May. She had a huge seizure on day 8 of her hospital stay which did something strange... Day 9 and 10 she was remembering everything like her brain had been "reset". It seemed like a full recovery so they released her with orders for a nurse to come every other day (but that was through Medicare, so it only paid for 15 nurse visits). We didn't feel comfortable with that so we brought her home with us for two weeks to recover. Then when she returned home my husband and I started going every other day to check on her. As she got worse we eventually hired an aide (which has been a serious financial blow). She has slowly declined since May to get to this point. I don't think the hospital itself did anything wrong but I do blame Medicare. She needed a nurse everyday for the last eight months. It makes me wonder what happens to other dementia patients that don't have any family. If she had been alone she would have told every doctor she was fine and they would have never questioned it. I had to push just to get her tested. There are definitely problems in the system.

The worker needs to know that she has to take insulin. People with dementia should not be in charge of their own insulin shots. I am a type I diabetic and I take shots. It is not feasible for her to do this for herself. Do you have written proof of visits to the ER regarding her insulin overdose? I would think the hospital would have not allowed her to go home due to that alone. Very bizarre. I would treat this as a REAL EMERGENCY.