My DH has diabetes (type 2, insulin dependent) and I know there are other spouses who do also.
If your spouse does, you need to know as much as they do about how they manage it. My DH has not been able to use a meter for about 6 months, does not know what is too high or too low, or what to do about it. But, he can use the remote, turn the close captioning on and off, and set a timer for the shows he wants to watch. He know the number of his favorite channel.
Like the meds, you will need to hover, monitor and eventually take over the meds and/or insulin they take and keep it out of reach when it becomes necessary.
Know how to check the blood sugar levels, what is too high or low (not what the doctor prefers but when it is dangerous) and how to treat it appropriately. My DH will suck but not chew glucose tablets, so there are liquid options to treat a low.
My DS, grad student, who lives with us has type 1 diabetes. In our house, we rule out blood sugar first before assuming other causes of any mental or physical changes. Even without diabetes, sometime the person is unable to accurate tell whether their numbers are too low or too high.
Good information PatB. Sid has Type II Diabetes. His diabetes doctor makes it mandatory to attend a Diabetes Education Class, and to have at least yearly visits with the nutritionist. As you can imagine, I'm the one who had to remember all the information from the class and nutritionist. The optimal glucose levels have been lowered and lowered and lowered every year. Now they want it between 70 and 120. I agree with you - know what is dangerous, not the almost impossible to achieve guidelines. Sid is not going to listen to me about what to eat and what not to eat, so when his levels started running between 150 and 200, the doctor added a medication.
So far, he is able to take his blood and work his meter himself. I sometimes have to remind him to do it, but it is so much a part of his daily routine, that he's pretty good about taking it.
joang, I once double checked what number my DH said he got on his meter and found his recollection of a few seconds ago was inaccurate. You might want to double check the result he gets and his knowledge of what it means occasionally.
My DH at this point can't even draw the blood-lancet too difficult to use now. Oh, and if he had it his way, he would stick the same finger every time.
The eating is a problem here too. He has no idea what a carb is or why he should or shouldn't eat them.
This topic could not come at a better time. Last week we had the diabetic visit..DH is on insulin. I took over filling the pill boxes using those am pm boxes. The doctor had told him to take one of them in the evening to prevent hypotension...so I set them up..he gets into the and moves things around...put the one pill back in the am side. I had to go through all the meds and make sure they are correct again..now I hide the pills and serve up the morning ones in the am and do the same in the pm. I have to remind him every day to take his reading and insulin..I finally got him a second glumometer so he can be testing while I am getting dinner or lunch..I am nearly at my wits end with this. His sugars are too high and I mean too high too much. He has been told he can have a glass of wine as a treat..he thinks that is every day. I catch him with pretzels or something he should not have. Tonight I tried to discuss this diet business with him..doc wants him to lose a bit of wt and to cut the booze ( he has a glass with some whisky and diet soda) and that the booze hinders memory or makes things worse..anyway he brushes me off as usual. I told him tonight I am thinking of a nurse to come and deal with this, I don't want to be responsible anymore. I know he has AD but damit I am sick to death of this. He NEVER took this diabetes seriously and I now am believing that all his problems stem from his neglect of taking care of the condition at the outset and I am P*$$%$ big time now. And if one more doctor or nurse or neighbor says to me " YOU need to do>>>>>" I am going to lose my mind or my temper withever comes first!
I read all the post on here and it makes me think of my son. He is hypertensive, overweight, has high blood sugar and already is showing kidney damage from it. He found out last fall but they lost state insurance (welfare type) in January due to his unemployment being too high. At the time they gave him a meter to watch is blood sugars and was suppose to go speak to a nutritionist, but he never did. His blood sugars run 180-200s all the time. He does have medical thru the VA but since they never picked it up he has little faith in them. It may not have been bad enough for them to pick it up. For the first month he changed his diet, lost 20 pounds but since then he has done nothing. Diet change didn't affect his blood sugars, and that may be part of why he gave up. He claims it is due to depression from his PTSD. He blames all his negative behavior on it. It is not like he doesn't know what will happen because he had an uncle (hb's bil) die due to complications (blood clot after having a toe removed). We have friends from church whom the guy has been on dialysis for years and numerous amputations - the last being his left leg just below the knee. Both of these guys refused to change and live a healthier lifestyle via diet and exercise. He has a BIL that is diabetic and has health problems despite diet and exercise so maybe he sees no reason to take care. He is still young (almost 34) but I have told him if he doesn't take charge of his life and stop letting PTSD control he will not be around to watch his children grow up. That doesn't seem to affect him either.
I think of him every time you all share the struggles with your diabetic spouses. I am so sorry you have this problem on top of all the others that go with this horrid disease.
You are fighting a losing battle. They don't remember what the doctor said to eat and not eat, and they are stubborn children about it anyway. They will eat what they want to eat. I finally gave up that fight. I cannnot be the food police 24/7. I don't argue anymore.
If he is on Medicare, and if the doctor approves it, he can get a home health nurse to come in and take his blood sugar (not all day long, but probably at least once a day). Talk to the doctor about it. I didn't have to do anything. I just called the ALF next door, said I needed help, and they set it all up with the home health agency they used. I'm only getting it for a month to monitor his sugars and reaction to the new medication, but if your husband is incapable and/or unwilling to do it himself, you can get home health help.
I just read that sad thread about the people who were charged with murder because of the death of the spouse or parent at the hand of the caregiver. Just imagine the no win we are in with this diabetes thing..something goes wrong with the pt..so we end up accused of not paying enough attention OR doing something wrong with the dispensing of medicines. For my parents we had a nurse that came and set up the med boxes and family or the CNA had to give it to them. Often we would find the aids forgot to give the meds at all.
THE diabetic battle got worse tonight. Before dinner I asked him to do the finger stick to get his glucose reading and then take his before dinner insulin. He said he would. He didn't. I asked him again to do this so I could dish up. He gets his things out and thinks taking the insulin is going to give him his glucose reading. It took quite a discussion to get him to understand he was about to give himself insulin without knowing how much to use. Then he finally got it and did the finger stick first. Today we had a doctor appt too to discuss other issues needing to be addressed. The legal issues we need to face and the POA etc. and then to have a social worker involved to assist with finding the inroads for services. Anyone got any thoughts on the pros and cons of social workers? What do they actually do? Also recommended he have testing by a neruopsychologist. I wonder what good this will really do. I am pretty discouraged tonight. It has been a terrible day.
Maybe I am too sensitive but the only thing the doctor said that ticked me off was telling me I need to see a counselor for instructions on coping with this disease..doc was really nice in every respect but that last suggestion put my teeth on edge..What the hell good is it for some counselor to tell us what WE have to do when THEY have not been in this position, don't deal with this day in and day out? Any thoughts?
Mimi, I love my social worker. She knows the ropes, is familiar with most of the 100 or so nh's in my area (greater Rotterdam), can help with application or just straight thinking about what to do next.
Mimi-- A Social Worker can be invalueable in connecting you to services available, help cut red tape, and be a sounding board for you when you're floundering through all the stuff we have to do. Mine made sure I started using my respite time--and got better at using as intended. Respite time is rejuvenation time for the caregiver--not frivolous and not for personal necessities (Dr. appts). A connsultation with a neuropsychologist and testing is also valueale. Even if you have a solid Diagnosis, a neuropsych Dr. knows a lot about the meds available and can advise when changes are needed. If you havn't got a diagnosi, you may not be dealing with Alz, but something else. This needs to be determind because there are some treatable conditions that can produce Alz like symptoms. Also, the kind of Dementia makes a difference (someimes a Big difference) in the med hat will work. As for the counselor--could be worth checking out. Some do know and can advise with coping issues. Others have knowledge without comprehension of the realities, and won't be much help. You'll be able to figure that out in a hurry, but if you do get one who's been there and done it, you'll have a good fallback source when things are rough.
For us, we have a Neuropsych Dr. supervising meds because our PCP is not comfortable with that--not his field. We also have a Nurse/Case Manager through our Area Agency on Ageing who has arranged our in-home help, my respite time, our contact with Social Sevices (I don't have to mess with them and all their paperwork directly); contact for our transportation (at reduced cost); etc. We now have Hospice as well. Through them we have nurse viosit weekly; an aide who has been coming weekly to shower DH--next week starts twice weekly; a Social Worker who is helping me start working on short term and long term "future" plans---(funeral and how things will work out for me). The Chaplain came Monday for a visit and brought a small vase of Carnations--they do that on Mondays for whoever has visits that day and whose worker comes by way of the Office. Such a small thing is such a BIG pick up on this road.
Mimi, there have been many complaints here about doctors not paying attention to the needs of the caregiver. My husband's PCP and neurologist have never once asked me how I'm doing, referred me to the Alzheimer's Association, or made mention of any kind of help for me. I found the Alzheimer's Association and a psychologist to help me deal with my emotions on my own, and I've learned a lot here about getting other kinds of help. I think you've got a good doctor because he/she did pay attention to your needs as well as those of your husband. I wish we were all so lucky.
That was a caring doctor to be concerned about you. He was saying that you can't change what is happening to your husband, but you can get help in coping with it, so you won't fall apart. The key is to find a counselor/social worker who has experience working with Alzheimer caregivers. If they don't, they are worse than useless.
Honestly, I considered counseling for myself during the worst of Sid's rages, but never seemed to find the time. (TERRIBLE excuse!) If I didn't have you folks and my support group, I'd be on the psychiatrist's couch 5 days a week.
One thing I did learn from my experience with my social worker is that no matter what a counselor tells you to do to cope, you won't do it until you are ready. Yesterday's blog about stages and acceptance kind of speaks to that.
Thank you everyone for the insight. I wonder how to check out the social workers? I looked on line for the ones in our area but don't know who is good or who is New Age..don't want to go new age or something kinkygoofy if you know what I mean. I am going to make the appointments either Friday or the first of next week. We have my 2 bils here and what a help they have been today..the dang toilet overflowed like the cup runneth over! We think we got that sorted out, the shower head sorted out and the kitchen door step had a small tile that needed a tiny repair..My last raw Irish nerve was fried today until after our "ALZ meeting where there is a lot of good people..it is like being here! Really good mod and there are rules to the conversation that are enforced..so it is really good. I got some of this adivce today too.
On the 10th May I am on a respite trip all the way to Iceland! Sounds like I am running away from home but not so..just going to work on the houses of one of our girls and her husband..so that should be the good kind of work, painting and tiles and decorating...fun..( and I hope a little shopping too) It will be my 5th time over but I digress..
Yes I think I'll dig into the social worker. Was told today that a good estate attorney could do the things an elder attorney can do. So we shall see. That needs done too. I love my DHs doctors..they are all wonderful..and kind. I found out doing a little search that his neuro is not only a neuro but a shrink too! How good is this? : )
Mimi who told you that an estate lawyer could do what an elder law lawyer can? I first went to an estate lawyer who came highly recommended. She drew up the wills an powers of atty for us both. Said nothing about how Medicaid works. We do not have long term care insurance and tho we live comfortably on ss and pensions we don't make 85000/yr which is what a nh costs. And I still need to live. There are perfectly legal wAys to work things out but you DO need an elder law atty who knows how to navigate the rules. Lots of old topics on here about this.
My husband has diabetes type II and has been on medication for years. Serious diabetes runs in his family, so I have been constantly afraid he would be have to be put on insulin injections. It happened last week. The assistant doctor who does his checkups said that his glucose readings were much too high (110-120) and it was really time for insulin. Things like "Do you know that AZ is a terminal disease?" were on the tip of my tongue but with dh there beside me I couldn't say much. DH claims that there's nothing the matter with him: NO diabetes, NO Alzheimers. So it's not going to be easy to take readings or give unwanted injections at home. Having the home care nurse come by every day sounds even more unattractive.
So the assistant got it all set up, prescriptions etc and I picked up all the stuff (bags full!) the next day and got a demo from the pharmacist plus folders about how to use it all. I was supposed to start by taking a reading once a day. I decided that a good time (the only possible time) would be after his bath, when he sits at my vanity and likes to have me fussing at his head with the blow-dryer and shaver etc. But last night he refused to take a bath, refused to let me shave him and wouldn't go to bed till almost 12 pm, so that was one good plan foiled. (Did he sense that something new was afoot?)
But I had insisted on an appointment with our family doctor whom I never see, I hadn't talked to him since first requesting referral for diagnosis back in 2007. Turned out he is very well acquainted with AD, quite a realist. My plan was to ask him if I could wait till after the summer to start giving insulin. He said it was nonsense to put an AD patient stage 5 on insulin at all and is going to increase the medication. For dh any readings under 200 are good enough. He said the assistant was a dear young woman but a stickler for numbers (And, I added in my mind, no understanding of dementia). A great weight has been lifted from my shoulders!
I thought I posted here this morning. Guess I forgot to click "add your comments." I also have Type II diabetes, and 110-120 doesn't sound that high to me. I'm glad you talked to the doctor rather than going with what the assistant said. It's good that you don't have to had testing and injections to your routine. Your husband's disease seems to me to be progressing rather rapidly compared to my husband's. I hope you are doing okay.
I am so glad the doctor nixed the insulin injections. 110-120 are EXCELLENT readings. According to Sid's diabetes doctor, 70-120 before meals is the range to aim for. 120-140 after meals is excellent. Sid's readings were running high- 150 -190, so he added a medication, and they are now in the 80-110 range.
Sorry, Joan, I have just looked it up (should have done so before) and found out that the European measurements are different. 10 corresponds to American 180 so 11- 12 is really too high. I thought you just added a zero but I was wrong, sorry for the confusion. The doctor just decided that given Siem's prognosis the use of insulin would unduly decrease his quality of life. And I agree wholeheartedly.
Wow, that is interesting. I know you are on the metric system for other measurments, but I never knew that diabetes numbers would be different in Europe.
This has been an interesting conversation. MyDH is on insulin and has been for more than a year. I have asked if he could go back on the tablets but was told no his pancreas is pooped out..his readings are higher than they should be. The problem I deal with is this..he is to test a4 times a day....he won't do that. He will in the morning and if I am lucky at dinner time. He is to take humalog before each meal and dose depends on the sliding scale. He takes Lantus in the morning and at night. I know his HA1C will be too high and I am the one who "get it" and gets told " you have to......" It is a daily battle with the finger sticks. I have 2 meters..one in the family room for him to use before dinner, the other in the kitchen which he uses in the morning. And I have to put out all the pills he takes etc. I just get frustrated at this whole pill business and insulin mess. And I feel guilty too..that maybe I am not persistent enough with the insulin injections. There are days I don't want to get out of bed.
Mimi, the situation you describe is exactly the reason I was fighting the insulin. How high are your DH's readings? This just does not work with AD patients unless they are very docile.
Last night I wanted to take a reading and thought that a good moment would be after our bath in the evening. He is quiet then. But after pricking his finger, no drop of blood would emerge. I then tried it on myself with the same result. I wonder if sitting in warm water for half an hour had affected our blood or skin in such a way that the blood drop would not form? I'll have to wait a couple days before trying again, in a different situation. Anyway it's no longer crucial due to my realist doctor (he has had lots of AD in the family and understood me completely almost before I had to say anything about "terminal illness."
Jeanette, I checked his reading this morning....226. Much too high. I get the tablets out and so far that is not an issue now..he just takes them. He does the finger stick and gets the results he has here and he does twist the insulin pen to the correct units.
I think a part of the problem comes in with his snacking between meals..he is not smart about it and if I want to get him to take some protein with his cracker he might do that. What he will not give up is the dang whisky even though he puts diet pop in it. The doctors have told him he can have it as a treat. In his book every day constitutes a celebration worthy of this treat.
I think some of his sleepiness is due to the higher readings as well as just this damn disease. He is pretty docile. I have to prod at everything..change your clothes..I can't just lay clean clothes out now I have to take it away after he goes to bed..and put the belt in the loop etc. He does stuggle with getting dressed not so much because of the AD as he is windless and it is such an effort. We have followup at the pulmonologist on Fri..I hope there is something more definitive about his condition here so that he can have a better quality of his life.
It really is so hard with AD and when there are multiple health issues mixed in this bargain it is even worse.
Agreed, Mimi. My husband has to wear a compression stocking on his leg, not from diabetes but from an infection many years ago that gave him chronic phlebitis. This severely inhibits his ability to walk; he uses a walker inside at all times; we use a transport chair when we go out, which is very seldom because getting him in and out of the car is about 15 minutes at each end. I can't remember when I laid clothes out for him and expected that he could put them on! He went fro of course doing everything on his own to being totally dependent somewhere around three years ago. At this point he has to be coached how to sit down, how to work his stair-chair, etc etc. Everything!
Briegull, what a job you have, I can't imagine. Compared to that, my "care-giving" is child's play.
Mimi, I have sent you an email. Good luck with the pulmonologist. Can you see the doctor who prescribes his insulin yourself without your LO along, to explain the difficulties?
Mimi- I haven't used insulin myself for my type 2 diabetes, but I read a lot of support groups for a while. You are stuck trying to use the modern flexible system, which is better for long term health (not an issue for your husband), but too complicated for your situation. The older system is one or two long-acting shots a day, and then the person has to eat on a regular schedule to match the action of the insulin. It can be dangerous if they don't eat and go low. But if your husband would be willing to eat candy if he refused a meal I would think that system could be much easier.
Thanks for that tip, pamsc. Next visit with the diabetic nurse I am going to ask about this. It may well be his toddies ( whisky and diet soda) may be the reason his glucose is so dang high when I know he is not eating a lot..I think he is forgetting how many toddies he has had. He never was an alcoholic. He might have a cocktail now and then. I have just wondered if the long acting insulin would work. I think it would make both of us happier if it could.