kittiemomNovember 26, 2012

I know there's a caregiver's forum here, but it doesn't seem to get a ton of traffic. I was wondering if anyone has any experience with dementia-type illnesses? My dad is 81 & is exhibiting symptoms of this. It's gotten progressively worse over the last two years. His short-term memory is basically gone. He will ask 10-15 times during a conversation about a doctor's appt. who is picking him up, at what time, etc. Typical of this illness, he has notes to himself everywhere. He then forgets to take the note down when he's done & that makes him even more confused. Unless my BIL is able to accompany him to lunch, we can't even be sure that he's eaten every day. He is constantly misplacing or losing things - cell phone, checkbook, etc. I had all his bills converted over to draft, otherwise I'm sure he would have had multiple things cancelled/turned off by now. He also has a mobility problem with his foot (it drags & he can't pick it up well). He has a lot of problems even getting in & out of his house.

He has long-term care insurance, but we need an official diagnosis. So far, he has refused to have his memory tested; he says his problems are just because he's getting older. He also refuses to acknowledge the problem with his foot. He just says that it gets stiff when he sits down & he's fine once he starts moving around. That is not the case. He needs a walker even to get anywhere in his house in order to maintain his balance. He's obviously a fall risk.

It's becoming obvious that something needs to change. Either he needs to go to an assisted living facility or we need someone to go to his home. So far, he's refused both. We have tried to go to his house & clean, but he's lonely & wants to visit instead. If we attempt to clean anyway, he becomes angry & says he'll take care of it himself or have my BIL help with it. However, he won't let BIL do it when he goes over. He also refuses to stop driving, though he is driving much less than he used to. I asked one of his doctors to contact the DMV about him not driving, but he said this was a family matter.

If anyone has had a loved one in a similar situation & has any advice, I'd certainly appreciate it. We have tried talking with him about this, but he absolutely refuses to admit that he has a real problem.

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Oh yes-I'm certain many here have experienced just what u r going thru now

Sounds like his foot issue could be a small stroke has happened

Typical of any senior,he is not going to accept that he is in need of help-or that he is aging

Could u consider a respite service for him-someone that comes over when BIL or you's are there and does some cleaning then?
My Dad was just like that-only his issue was senility dementia-My Mom was Alzheimers-major difference,btw.

Definitely get some help into his house,the best way possible

Obviously,he is not going to be easy to deal with,so you make have to do it all on the sly-be sure there is a current POA in order as well.

Keep track of all that u can,including his moods,his accidents if there are any,his money-everything

Good luck

    Bookmark   November 26, 2012 at 7:20AM
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Oh, I've been there. MIL had Alzheimers, my mom had various physical and memory issues (I was her caregiver), and Aunt had a bunch of issues that necessitated us getting her into assisted living, getting rid of her car, and closing her apt.

It's never easy for our older loved ones to have to deal with losing their abilities and independence. It's even tougher for us to take on the job of 'parenting' them and making them do things they don't want to.

I'm so sorry to hear about your dad. But he's way past the point where he needs to have more help.

There's no one answer for you, but a few tips I'd suggest:

Contact the Alzheimer's association and sit down with someone there--they will be able to give you some suggestions. You are NOT the only one dealing with these issues--it's common and they've seen it before.

How about calling his dr. He can't discuss Dad's health with you unless you're on the hyppa list, BUT he CAN listen to you, to your concerns. I found that with aunt and mom, changes were often easier IF the dr. told them something was needed. It's that figure of authority thing.

He definitely needs help around the house, help with meals and probably could use some help/supervision with bathing. That means a home health aid. It's not that expensive to have one in a couple of times a week. They clean, cook, bathe, visit, and they're an extra pair of eyes to help you see that things are okay. If you can get a diagnosis from the dr., his medicare or insurance may pay for an aid. Another benefit is that a nurse visits to assess every now and then, and you also have access to other services like occupational and physical therapy--those experts will help keep him in the best condition and will help you understand what simple adaptations will keep his environment safe and easy to manage.

Driving--that's a tricky one. Mom voluntarily gave up driving the last few years of her life, and was content to have us do her shopping, take her out to lunch, etc. Aunt kicked the whole way--but once she went to assisted living, I sold her car since I was her POA, so that was no longer an issue. But I think you really need to move forward on that soon--you're going to feel horrible if he goes out in the car and hurts or kills some innocent on the road. And I cannot tell you how many dementia/alzheimer's sufferers go out in the car, get lost and cannot be found for sometimes days, and often many miles away.

Cleaning--Look, this is hard, but you CANNOT allow someone you love, who is no longer capable of taking proper care of themselves dictate to you. If his house isn't clean, something needs to be done--it's both a health and safety issue. He's quite obviously not going to handle it himself. You all are going to have to put your feet down on this. What about the whole family descending on the house--make it a festive day. Take in food for a nice family meal, take turns sitting with him and visiting while the others clean. Or have one person take him out while the rest of you clean. Alternatively, perhaps involving him would work--a couple of you go over, pick one small area of the house, and say, "Hey, Dad, how about we go out for lunch after we straighten up your kitchen." Give him simple things to do to help while you power through the rest. Perhaps he'll feel better about it that way?

One thing we all need to remember when dealing with our older relatives--today is as good as it's going to be. In most cases things are not going to get better. Hoping, waiting for things to get better is sadly, unrealistic.

Assisted living was a godsend to us for Aunt. She got excellant care there--they had all the professionals needed to make her life safe, healthy and easier. There was plenty of entertainment to make her days pleasurable. The food was excellant and delicious. Having help--be it professionals coming into the house or having the senior in assisted living is good for several reasons--they know more about handling this stage of life than many of us do, it's actually mentally healthier for our seniors to live among their peers than to be either alone or living with younger family members, and by having help to do the tough work, it gives us time to visit and ENJOY the time we spend with them--rather than put all our energy into worrying and trying to rearrange things for them. And it doesn't have to be the most expensive facility--the one we chose for aunt happened to be just about the least expensive we looked at--that wasn't why we chose it. They were wonderful and offered so much.

This is a very tough time of life for all of you. Unfortunately, no one really prepares us for the day when we have to start parenting our parents, and it's a really difficult transition. Just know that even if your decisions aren't popular with your father, his health and safety HAVE to come first and by providing those things you ARE showing him your love. Good luck to you all.

    Bookmark   November 26, 2012 at 8:59AM
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I've been there, too, with my DH. The source of his dementia was never firmly diagnosed, but his dementia started, slowly, at age 65 and went on for 10 years.

Azzalea gave you good advice, and I want to reinforce one piece of it: Look, this is hard, but you CANNOT allow someone you love, who is no longer capable of taking proper care of themselves dictate to you.

It's terribly hard, I know, and goes against a lifetime of family roles. But some role reversal is often inevitable as life goes on.

The driving is a big issue. It's good that your dad is driving less, but he needs to be off the road for his own and others' safety. His doctor really dropped the ball on this. You could contact the DMV yourself, or maybe the State Police could be helpful. AARP has a lot of information on this. You might check out this "We Need to Talk" feature.

I remember the notes. Boy, do I ever. In fact, back then I wrote a poem about the notes. Writing was one of my lifesavers during that time. If you like, you can read it here.

Is it possible you can find a caregivers' support group where you live? We had nothing like it here, but I imagine it could be extremely helpful in a number of ways.

    Bookmark   November 26, 2012 at 10:19AM
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Please check out this thread from the Caregivers' Forum. And even tho it's a slow forum, there are treads LOADED with good info.

Good luck, it's a tough job, taking care of someone with dementia.

Here is a link that might be useful: thread about dementia

    Bookmark   November 26, 2012 at 10:33AM
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kittiemom, I agree with the issue of the dragging foot, short term memory, and mood changes, he could be having TIAs or mini-strokes that could mimic dementia. I'm taking my own mother (85) to a neurologist this Friday for followup on TIA's. Her doctor has done ultra sound scan of carotid arteries, heart and lung work up, diabetes screening and no problems there but her MRI does show evidence of the TIAs, tiny, tiny bits of damage. He's told her not to drive (chance of her becoming even briefly lightheaded or dizzy at the wheel), it's been very difficult for her - and for me, I'm 2 hours away.

When was the last time your father had a complete physical geared toward his current issues? Might be a place to start. Also, has he signed consent for you to speak with his doctor when he isn't present, have access to his medical records. A private appointment with his doctor to discuss your concerns another possibility....

    Bookmark   November 26, 2012 at 11:31AM
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With the new health laws you have to have your Dad sign a form at the Dr's office for one of the family members to be able to talk to his Dr. If this is not done the Dr's office can't help you. Now about his driving, don't wait till he has a accident to do something about this. I would try to talk to your Police Dept about this. Some times they will help you. I know a few years ago all it took was a policeman talking to my Aunt to give up her license. It is worth a try. Good luck

    Bookmark   November 26, 2012 at 6:13PM
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Thanks everyone. It's getting to be difficult trying to manage so much of his daily life while this far away.

We think that the foot issue is due to some past damage from a bone spur on his neck that damaged the nerves to his foot. When he had surgery to remove it, they told us that the dragging shouldn't get any worse. It has, though. I had him back to the orthopedist not long ago to see if maybe he had another bone spur. They did an MRI & found nothing. They did call it "drop foot". I asked about stroke, but two of the doctors who saw him said that wasn't it. I still think he may have had a stroke. Maybe getting him to a different doctor would help.

He is a retired Master Sergeant, which makes it even harder. He is accustomed to telling others what to do & does not take it lightly when someone disagrees with him or he thinks he's being told what to do. He doesn't like to go to the doctor & is very nasty if an appt. is made for him. He had a physical a couple of months ago & was told that he's in good health. He is, except for the two issues I mentioned. He has to be in a wheelchair to get around at the doctor's office. I've asked several of them to have him get up & walk so they can see how bad his foot is, but they say that isn't necessary.

My sister is several years older than me & keeps putting off dealing with this. We have discussed guardianship, though we don't want to go that route unless we have to. My dad did sign financial & healthcare POA's several years ago. They are revocable, though. I spoke to his attorney & he explained to me what is required to be legally competent to sign documents. It is very possible that he could and would revoke if we attempted to use POA, leaving us no alternative but to pursue guardianship.

I'm well acquainted with HIPAA laws (I work in healthcare). I'm having him sign the forms at any appt. where I accompany him. I've had his other doctors send me the forms via email so I can get him to sign.

I really feel at this time that assisted living would be the best thing for him. Even with his LTC insurance, we can't afford to have someone 24/7. I worry about what would happen if there was a fire at his house. He's already fallen a few times but thankfully hasn't hurt himself yet. I've found a really nice place right around the corner from my office. There is another one in the nearby town where I live. I have an inside scoop on which are actually the nice facilities because of the nurses at work.

    Bookmark   November 26, 2012 at 6:58PM
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Have any of you seen the YouTube video of Dr. Mary Newport and her husband Steve? He has Alzheimers and was getting worse all the time. Being a physician she researched everything.She knew that the medicine available could only keep the disease from getting worse. She heard about coconut oil. She tried it and it worked! She found that it had medium-chain-tryglycerids which help the blood flow to the brain. She thinks that dementia and Alzheimers should be called Diabetes 3. Her husband has made remarkable progress. She says that he is getting back to his old self. He loved reading, but it became impossible for him. Now he can read and understand what he is reading. His gait has changed back to normal. He has gone back to running, which he loved.

This video is well worth watching.

    Bookmark   November 26, 2012 at 7:56PM
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You've gotten some good advice, and do go back and check out the thread about dementia. POA is essential, plus the durable POA. No, you can't let this continue. The child becomes the parent--it's tough. I know. Re the driving--I went to the DPS here and talked to them, and they sent my mother a letter and said it was time for her to come take a routine driving test. So, she did, and failed it, and they took her license away. We weren't the bad guys--they were supportive and did it for us. If he has an accident and really injures someone, that will be terrible. It's hard to accept this, but it's a real thing, and something you have to face. I hope you can do it as painlessly as possible. There's a good book--the 36 Hour Day, or maybe the 48 Hour Day--anyway, it's quite informative. God bless all of you.

    Bookmark   November 26, 2012 at 9:45PM
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You have a challenge for sure and yes some things need to be done. But a little dust in the home isn't something I'd jump up and down about when he's out driving. Establish your priorities.

First things first. Laws of course vary from state to state so you need to do some research. Here in MN, a guardianship is not an easy thing to get. A Conservatorship is far easier and gives most of the power that would be needed here from your description so far. It would enable you to help with finances, etc. I'm not sure what your "draft" system is, I'm assuming it's some sort of an automatic bill payment. That can be OK if someone is monitoring it. He's still going to be susceptible to the phone scams, disreputable family members, neighbors, and others who prey on this type.

Driving. You should get a statement from the doctor on his ability to drive. Put it in the doctor's lap if possible. I don't know his driving habits or anything but hitting a kid or getting lost are real possibilities. Even contacting the DMV seems extreme but a lot of people simply shouldn't be on the road and they can help evaluate. My dad went through it as did a good friend. Another friend was forced into it when his mother took his (these days you have to say) "challenged" daughter and disappeared. They were going to the store and she got lost. We had everyone we knew out searching for them, police and highway patrol were alerted. This was before cell phones were so cheap that everyone had them so there was an extra challenge there too. They were found, pulled over on a freeway ramp. That was enough to get him to pull the keys and take away the car.

My dad was the same way, attitude-wise. Nobody's gonna tell HIM what to do! You need to approach it like handling a kid at times to avoid tantrums. One way that helps is to make them think it's their idea. "You wanted me to remind you to make the appointment" or "That was a good idea to get that checked out, you should do that right now. We'll go do it and stop for lunch afterward" or whatever works with him.

My sister and I would go over and do some cleaning while he was gone. A lot of times he wouldn't notice it, which was all the better. I'd stop and mow while he was sleeping or gone. At first it really angered him but then it wasn't too bad. He started getting used to it. Otherwise, the suggestion to go in a group, even 2 or 3 is good, and 1 or 2 keep him occupied while other(s) tend to some things and rotate out. The biggest thing is to get it started and go. It has to be done and putting it off isn't going to make it better or easier for anyone.

The optimist in me wants to point out this can even be a positive experience. Spending time with them while you can is enjoyable for both. Take a recorder and get him to tell stories, family history and the like. It also exercises their minds a bit. The recordings later will likely be treasured.

Assisted living is nice, but around here, I doubt he'd be allowed into assisted living. Much depends on the local definition. Here, you have to be able to care for yourself for the most part. If his mind is going, he's going to be sent to a nursing home around here. Assisted living is exactly that, an assist. They'll give you the option to eat in the dining room, the option to have someone do light cleaning, the option to have someone wash clothes, etc. If he needs physical therapy or something, that is not part of assisted living. If you cause any trouble for any other residents, you're out. They do not have people who check on you daily, care for you, etc. It's an apartment with amenities for people who are having trouble, but it's NOT a nursing home and they're not about to become one. Went through that with my one aunt. They were patient with her and she became good friends with the administrator so they let her stay there longer than most but she was bumped to the nursing area when she was having troubles. An old GF's uncle was in a fabulous one in Eau Claire. I'd love to move into that place! Price was very reasonable there too. But there too, it's assisted living, not for someone who needs advanced care. So do some research on that before assuming things.

Good luck.

    Bookmark   November 27, 2012 at 10:07AM
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Let me just add that assisted living can vary greatly. Around here, if you can get into assisted living, many (actually all we looked at) have the facilities on site, for those who become worse over time, and they don't 'kick them out'. The place Aunt was in was classified as AL, BUT they did have the various therapists available, they kept her on, even when she had various injuries (broken shoulder), and they had originally promised me that they'd keep her on even if/when she needed hospice care. They did--the last weeks of her life, she wasn't able to get out of bed, nor to feed or take care of herself. She was allowed to stay in her room until the end.

It's something you need to research. The assisted living we got Aunt into was under $5000/month--and they did everything we needed them to. Nursing homes around here can be up to $10,000/month and are often more like hospital settings than comfortable apartments. I was glad we found such a wonderful facility for Aunt. Even the dining room was gorgeous--looked like a French Restaurant, and they had a relatively extensive menu.

Be sure, if you look into facilities, that you find one that's right for his current needs, but that will continue to care for him when his needs increase. You definitely don't want to have to keep moving him around, nor do you want his needs to be neglected because he's in the wrong place for his condition.

    Bookmark   November 27, 2012 at 10:48AM
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A lot of good advice from posters. He certainly should not be living home alone and please, please, do not let him drive! Take the keys, or better yet take the car & tell him it is in the shop being fixed. Assisted living would be ideal for him at this point or he may even have to go in a nursing home. My husband gave up driving on his own when he was just in the early stages. Wishing you the best with him, it is a terrible disease to have to deal with!

    Bookmark   November 27, 2012 at 6:11PM
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Has he been assessed for depression?

(Never mind about the *cause* of the dropped foot. It just IS, but he needs to deal with the disability.)

It's pretty normal to get angry as a sort of defense when you feel yourself failing -- to resist even beneficial change because it's 'the unknown', or to have unrealistic fears of any group living situation.

My MIL fought to stay 'home', but when her RA became too limiting (and we had depleted the supply of live-in help), she agreed to visit a couple of places. She moved to a graduated-level nursing home nearer our home. Surprise! She IMPROVED! She was less lonely -- and the mild anti-depressant prescribed slightly elevated her mood. Not unlike your Master Sergeant, my MIL had been an RN and hospital admnistrator, used to dealing with *people*. Once she was with them more, she rallied!

    Bookmark   November 28, 2012 at 12:19PM
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chisue, I'm pretty sure he's depressed. He hasn't been the same since my nephew died suddenly at age 23 a few years ago. They were pretty close. I think he's also a little depressed because he's always been in excellent health & been independent & now that's changing. He doesn't believe that depression is real, however. I've been depressed & taken meds for it. He was really nasty to me when I finally told him about, saying that there was no such thing & that I should be able to make myself happy instead of having to take meds. As you can see, he can be really difficult to deal with. He's mentioned that he's lonely at home & I'm sure he is. I know I would be. I think he'd really like it if he had people to talk to during the day & that he'd be much happier. I really worry about him a lot. He's even refused a Life Alert or similar system.

    Bookmark   November 28, 2012 at 10:23PM
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"He's even refused a Life Alert or similar system."
Ask him to wear one, just to keep _you_ happy, so you won't have to worry all the time. My late stepdad was a falling risk and lived two hours away. If he fell he had great difficulty getting up. Finally after I tried phoning him for two days and not getting any answer (he lived alone after my mother passed, and rarely went out) I had to call the local police to do a welfare check on him, to be sure he wasn't lying on the floor unable to rise. It turned out he had gone into hospital for a small procedure and hadn't thought to mention it (whew!) But after that we got him the Life Alert so I wouldn't spend hours visualising him hurt and helpless. He was actually glad to have it once it arrived as it kept him that bit more independent for a while longer.
We had also suggested he might be happier in an assisted living situation, as he was alone for a lot of his time, but he refused to move. He also refused my offer to hire a cleaner (he had really let the place go and every visit I ended up spending a lot of time trying to make it less of a health hazard). In the end he became ill and had to be hospitalised, and while he was there the doctor told him he could no longer live at home.
I helped him tour and select a nursing home (he came out of hospital in a wheelchair) and settle in. I actually got to see more of him as it was much closer to our home and I could visit weekly. He was as happy as a pig in a wallow as he had clean surroundings, delicious meals he didn't have to cook or clean up after, caring staff and lots of new friends to socialise with, something he hadn't done for a few years. In retrospect I wish the doctor had spoken up earlier, as he was so much happier in his last year than he had been for years beforehand.

    Bookmark   November 29, 2012 at 12:02AM
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Lots of good advice, I can only add that you should check with local DMV.. In Indiana, you can fill out paperwork to anonomously report lack of driving skills whereby the DMV sends out paperwork to be taken by driver to their physician... I reported my mom for lack of reaction time and mobility [can't turn body/head] issues..

    Bookmark   November 29, 2012 at 11:48AM
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There's another way you might get action on the driving thing, if you're unwilling or unable to make any headway with him yourselves--let his insurance company know he's become less able in that dept. You'll probably get some help that way. I once reported someone (not a relative) who I could see was becoming more and more dangerous on the road--having a little accident every week or two--and it wasn't long before he was no longer driving. Guess it's kind of mean, in some ways, but sometimes it IS easier to have someone in authority be the 'bad guy'.

As you've seen in these posts--most elder relatives resist the thought moving to a facility that's better suited to their stage of life. It's just because they don't want change. Many end up being happier once the move is made. It's important though, to do it while they're still able enough to be able to settle in nicely. Much more difficult all the way around if you wait until a medical crisis makes the move imperative. I'd go ahead and start doing the research on the options in your area--even if you don't place him in the next few months, it's a help to know what's out there for when you do need to make that choice. Again, good luck to you and your family.

    Bookmark   November 29, 2012 at 12:20PM
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