Should an insulin dependent diabetic with dementia live alone?
My mother-in-law was recently diagnosed with "mild congnative impairment" after 8 months of testing. She is only 65 years old but she is a type 2 diabetic. The Neuro Phycologist that did the testing said that he believes she is very close to "vascular dementia". We think she is much much worse and is a master at hiding it from the doctor.
She lives alone in a 55+ apartment complex. She can no longer drive (but insist that she can) She cant remember to check her blood sugar, or take her insulin when she should. She is supposed to take a short acting insulin after every meal, and long acting insulin at night before bed but she forgets to take them sometimes. We check her testing meter every few days and her readings are wildly erratic. 52 in the middle of the night 505 in the late afternoon. We have tried so hard to get her to fill out a chart (which we hung on her fridge) listing her glucose readings, meals, and insulin doses, but she can't remember to do it.
She eats a lot and eats carbs and sweets often. We started grocery shopping with her about 8 months ago but she gets her friends to take her shopping and buys junk.
She can no longer pay her own bills, or balance her checkbook. She has no short term memory longer than a few hours. She does not know that she has dementia and does not understand why we come over and call her so often. She has been told by the doctor, and by my husband and I at least 75 times! We can sit down and explain it all to her and she gets upset and cries but then an hour later she has no idea that we were even there! This seems way worse than "mild impairment" to us!!!!
This all started about 8 months ago so it's still new for us! We have no other family to help out with her care. I've had to take time off from my business to take care of her but
I can't keep this up! Should we continue to let her live alone? We tried hiring an aide but my MIL keeps telling her not to come or doesn't answer the door or phone. When we call or go over to check her sugar she gets irritated! We are losing our minds and don't know what to do next :(
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A person with dementia beyond the very earliest stage should not live alone.
A diabetic who cannot manage her disease needs help.
I agree with you that MIL is further along than the doctor recognizes. Sounds like she can successfully "show time" at the doctor's office.
MIL MIGHT be able to continue in her apartment for a while longer, but only if you can work out a system of getting her to take her insulin appropriately. That might be calling her at each mealtime, having an aide come in at least once a day, having a full-time aide, or some combination. (If she can do her own shots and only needs someone there to remind her and to see that she does it, the in-home help would not need to be a nurse.)
I am not very confident you can get this worked out. Poor MIL doesn't understand the need to cooperate. She isn't being deliberately difficult but she is putting herself in danger. Even without the diabetic consideration, she may be unsafe (or soon will be) around the stove, getting in and out of a tub, and making judgement calls -- like letting people into her apartment or giving money away.
Dementia is always very sad, but it always seems to me especially tragic when it appears in someone so young.
I'm afraid that you are going to need other arrangements to keep MIL well and safe, and you may need them soon.
We have an aide going Tuesday's and Friday's to fill her morning / night medication minder boxes and check her test meter readings. The aide calls three times a day M-F to remind her to check her sugar and take her insulin and we call her or go over on the weekends. The problem is that she never eats, sleeps or checks her sugar on a schedule. She often does not go to bed until 4:00AM and sleeps till 11:00AM which throws off the "normal" times for her meals. Then other days she's up at 7:00AM. So we never know when to call her. Even when we call her we have no idea if she's telling us the truth or if she even took any insulin. Sometimes she tells us a fake glucose number just to shut us up. Her favorite is 136.
But every single day she tells us that she does not need her aide anymore or that we don't need to call her about her sugar.
When we explain that she has not been managing her diabetes or taking her medications she does not believe us. Until we prove it to her through meter readings or empty pill bottles. Then she cries and says she understands that she needs help. The next day... She remembers nothing!
Should she be living with us? Or in Assisted Living? Or a nursing home?
She and her son (my husband) don't have the best relationship And having her live here would push him off the edge! And I would be right behind him!!!! I don't think our marriage could survive it.
She should not live with you. Even in ideal circumstances that is a tough row to hoe, and these circumstances are not ideal.
I believe in assisted living they could at least monitor her blood sugars and manage her medications. And they can help her keep to a schedule. She'd still be able to eat erratically and inappropriately but it would be easier for her to eat well and on schedule.
If that isn't adequate, a nursing home placement might be necessary. I hate to see that at her young age, but there are some places that are quite nice and could be pleasant for her.
Does her financial situation support play for a care center?
Some may mention Dementia Care. That would be appropriate if/when she is a wandering risk, or if her behavior is/becomes disturbing to others. It doesn't sound like that is the case at this point.
I think you have a lot of research ahead of you. Dementia impacts the entire family, and I am sorry you are facing this.
Now that we are getting to daytime in the US others will be along and you'll get a variety of opinions. Mine are, no, she shouldn't live alone, and no, she shouldn't move in with you.
Can her finances afford an assisted living facility where aides will check on her several times a day?
Does your husband have power of attorney for his mom? If no, he really needs to do that first and foremost. Only then can you and he make decisions for her care.
My 92 yr old Mom and 94 yr old Dad live with me. I am retired and act as their full time caregiver, with help from morning and overnight home health aides. Dad has mild dementia but that can still be a handful to deal with.
Otherwise, assisted living is choice 1, followed by 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!
if she is resistant you may do a little fibbing to get her placed. Most places are used to dementia residents yelling about going home but the admin folks will usually accept POA and a letter from the treating doc stating mental incompetence. Worst case, you'd have to go through guardianship process.
Sorry you are going through this. I'm in a similar situation. Take action. Don't let this ruin your lives. And remember, there is only so much you can control. Her dementia is only going to get worse. Things are going to happen no matter how much you plan and take precautions. It's not your fault.
Not enough.
Until you can get her approved for Medicaid than some arrangements need to be made.
Does you husband have any siblings? They can take FMLA since you said they don't live in the area and help out.
Good luck.
Irishboy, I hope you don't think we are neglecting her. We have thought of all the scary scenarios that could happen with her impaired memory and insulin. She has had three ER visits in the last three years for overdosing on insulin and bottoming out her sugar. The last one was in May, she was hospitalized for two weeks and that's when we noticed a problem with her memory. We are terrified and know that we need to do something, we just weren't sure how far to take it. That is why I turned to this group to help us make an informed decision before it's too late!
She is approved for full Medicaid as of January 1st 2016.
No my husband has no siblings. She is a widow and has one living brother who is 70 and lives in another state. What is FMLA?
I'd call this week and see if the initial assessment is being scheduled, and to ask for one if it is not. (Husband may need to make this call, as POA.)
The Medicaid worker can explain all the options. States vary on how they handle Assisted Living. Nursing Homes are fully covered.
I'm so glad you've taken care of the Medicaid application.
I agree that the huge challenge and stress now is getting a 65-yo woman who believes she is perfectly fine to accept 24 hour care. I hope the case worker can help with suggestions.
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.
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!
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.
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.
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.
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 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.
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....
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.