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From the lens Tips for dealing with alzheimer's.

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Mar 9, 2012 @ 5:01 pm | delete

I lost my mom exactly a year ago. March 2011. She had Dementia and alzheimer's. I love elderly people. If you have an elderly mom, father, uncle, sister, brother, etc. Please take care of them and give them all the support you can. Don't forget, we will be like them someday. I love your len.

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Julie Castro Jan 20, 2011 @ 10:33 am | delete

You called my comment comparing the lack of sleep a parent gets with a newborn to the lack of sleep a 24/7 caregiver gets "irrelevant" but all that tells me is that it is irrelevant to you. From what I gather, your experience with personal, 24/7 caregiving was short-lived. As the moderator, you can decide what is "relevant" or not, but it's still just one person's opinion, and not necessarily what is "true." In my opinion and experience, the comparison rings true. If the type of care you are describing as normal for The Netherlands were available for the average, middle-class person in the United States, there would be no question that it would be better for both. In point of fact, it definitely isn't that way. I would encourage you to actually visit nursing homes in the United States (for average, middle-class Americans) before you promote them. Not googling; not reading statistics; not viewing videos designed to soothe anxious family members. Actually spend the day at one, observing, observing, observing. You are writing from an isolated experience and sometimes I feel you are trying to absolve lingering feelings of guilt. When people want to care for their aged parents (even if it's hard) you seem to try to dissuade them, again promoting the care your mother received in The Netherlands. How nice for the The Netherlands -- I wish that were a beacon for the world -- but most of your readers don't live there and American nursing homes are a far cry from that.

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Julie Castro Jan 16, 2011 @ 6:39 am | delete

"Or to put it more drastically: Don't you think your dad deserves someone helping him during the day, who had a decent night sleep?"

Sure, and the same could be said to a new mother:
"don't you think your child deserves someone helping him or her during the day who had a decent night's sleep?" YES, that child does, and YES that mother does, but you don't quit even if you need more rest. Just something you might want to consider.

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spirituality Jan 16, 2011 @ 10:10 am | delete

I'm not saying it's a crime or anything like that to take care of your dad at home. I just know I could not do it and that my grandmother is happy where she is. And now, when I see her, I'm able to give her quality time. I'd be continually exhausted if I had to take care of her for every little thing. And my business would suffer too. The result would be that we were both less happy than we are now.

Even when she was in a home we weren't happy with, I still felt like they took better care of her than I'd be able to.

To compare it to a mother and child is irrelevant. I wish on every new mother the care my mom had from a day nurse (was standard back then in The Netherlands) when we were infants. I'm sure she was more capable of taking care of us because she had that help.

Of course one factor here is the alternatives. In my case, here in The Netherlands, we were able to find a great facility to take care of her. She has her own room, the architecture is such that she can wheel around the place without bumping into 'not allowed' or walls, and the nurses are great. If that wasn't the case, I might have felt very differently.

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Georgie Holme joyceholme@btinternet.com Jun 9, 2010 @ 8:15 pm | delete

im scared my grandma has alzheimers i lived with since i was born and her memorey is getting worse and she blaimes me for thing and wakes up and thinks shes in another country and dosent rember who i am or where she is she came back from the hospital today they were holding her there and she was cring out for me so i couldent leave her she was telling me she saw murders in the hospital and they were coming to kill her but the doctors never diagnosed her with anything and im worryed what shes going to do next tomorrow morning :(

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spirituality Jan 15, 2011 @ 6:36 am | delete

I'm sorry to be responding so late. You need to get her diagnosed. ASK the doctor if they think it's Alzheimer's, don't wait around for them to come up with that on their own. Even if it's not precisely Alzheimer's, this is clearly a situation that you can't cope with without support. I know I could not.

I hope since you wrote this you and your family have resolved this in some way.

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Sha May 12, 2010 @ 9:22 pm | delete

I need to know if a person with Alzheimer's can perform a simply task like wiping themselves after going to the bathroom and the very next second forget how to do it. Help!

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Sasha Apr 29, 2010 @ 4:36 pm | delete

How do you cope when you hear your loved one saying negative things about you? I often walk in on my grandmother relaying a fictional story to someone about something I've supposedly done or said and it breaks my heart.

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Julie Castro (using a friend's email) Feb 2, 2010 @ 2:24 pm | delete

Visiting someone with Alzheimer's is vastly different from living with and caring for them. The caregiver can only get frustrated and exhausted with repetitive statements or questions. At first you DO try to be creative and then you try to keep your answers short, and then you try to distract, etc., but eventually, this trait will drive you positively OVER the edge. Some of the things my Dad says he has said within a three-year time span, about one thousand times, and that is not an exaggeration! You have to stay calm or you'll wind up blowing up at them; sometimes you have to just change the subject or let the subject drop and focus on keeping yourself from wasting your own energy. At some point, they have no concept of how many times they've asked or stated whatever, so they won't even remember you not answering them after five hundred times of answers. At some point, nothing you say will really make a difference. It's the emotional color of what you say that they're tuned into. If you're so frazzled you can't be emotionally kind, then it's better just to exit yourself for awhile (to another room, or whatever) to take care of yourself a little.

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calendarsblog Feb 4, 2010 @ 3:43 am | delete

Hi Julie, you're very right. It's more important to stay patient, than which words you use. And yes, taking care of yourself is very important, especially if you're a full time care giver (something I've avoided being).

In fact one reason I'd recommend putting Alzheimer patients in 'homes' is because it's just too much for an individual caregiver to deal with. When it's a job that needs to be done, and the caregivers get to go home after, it's a much healthier situation for the caregivers. Still hard as hell, but doable.

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Julie Castro (using a friend's email) Feb 4, 2010 @ 12:24 pm | delete

My Dad was in six different nursing homes. But unfortunately, the dietary situation and the prescription drugs actually made him worse. His taste buds are still pretty good. His Dad was a baker, so he grew up with good bread, and other healthy, wholesome foods. He could not stand "nursing home food." So, he would hardly eat it. Also, they'd give him one drug to solve one problem, and that drug would create another problem or two, for which they'd give him another drug, and so on and so on. Now that he lives with me, he eats wholesome food which he relishes, is not on any prescription drugs, and his blood pressure is at normal. His doctors have informed me that he's doing "great." Of course, his dementia is gradually worsening, and that's the hardest problem of all. But he is not sliding quickly downhill in a "nursing home." Until nursing homes realize that nutrition, exercise, sleep and fresh air are some of the core foundations of good health...I'm not going to put him there. But if there was a nursing home which focused on those core foundations, I would be happy to place him. I haven't found one which his insurance will cover, and we can't afford to pay for that privately. So...we forge on! Some days are better than others. I have been reading about the breakthroughs in niacinamide therapy and have ordered some. I have found that most of his other symptoms can be treated successfully with a variety of natural products. One of the drugs he was on, Seroquel, actually gave him tardive dyskinesia -- it's a serious neuropathy which the company's own website acknowledges. He does well with a blend of kavakava and other herbs to handle stress. As hard as it gets from time to time -- and it is hard! -- I have more peace of mind knowing what he's eating and taking into his body than visiting him at the "home" and seeing how much worse he was getting -- fast. I know this will step on some people's toes, but it's the reality I've found.

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spirituality Feb 4, 2010 @ 1:03 pm | delete

Sure - I forget - the quality of retirement homes and nursing homes is not equal in various countries. I was talking about the Dutch situation where it IS possible, for aware family, to get an Alzheimer patient into a decent facility.

My grandmother is not on regular medication either - because the nursing home doctors did not recommend it. But the nursing staff would have put her on meds long ago, if they'd had their way.

I do applaud you for taking this on yourself. I hope you have enough of a support system around you to make sure you get enough time for yourself and keep your energy up.

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Julie Castro (using friend's email) Feb 4, 2010 @ 2:44 pm | delete

Re: "I do applaud you for taking this on yourself. I hope you have enough of a support system around you to make sure you get enough time for yourself and keep your energy up." Thanks for even mentioning this. My support system is really not quite enough, but it's better than zip! I just make do from day to day. My spiritual beliefs are super-important; prayer gives me strength to continue and changes my state of mind from gloomy & angry to patient and loving, and since that works, like a satisfied mouse in a maze, I'm tapping into that as much as I can!! I have a couple of friends who don't mind me venting on the phone, and one who actually "visits Dad" also! I miss swimming, which used to give me energy, but I'm determined to somehow get back into that this month of February. Frankly, family hasn't been much help with Dad. I can't "complain" without getting the, "Well, you can always put him into a nursing home" response. They spend zero time with Dad unless I'm there, despite promises to do so in the future -- it just never pans out...everybody is just too "busy" or "other reasons" come up. It's disappointing that they won't expend a little effort to give me just ONE DAY a month. That would be HUGE! So I do privately hire someone who's good with Dad and gets my needs, for approximately four hours a month, and whom I trust in our home, but this fluctuates depending on our budget, and it's a tight one. I wish I could hire her more often, but the money's not there at this point. As someone wrote in, caregivers pretty much just get by (not an exact quote) and that's what we do...but Dad seems to be happy (or "blissfully unaware"), anyway! And when I take the "long view" I realize this, too, shall pass -- this is temporary. When he passes (if I'm around for that) I think I'll have some peace knowing I gave it my best shot, all things considered!

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Julie Castro Feb 5, 2010 @ 12:58 pm | delete

I just want to add to this, because reading it I don't feel I've conveyed how extremely hard this can be. On my worst days, I am so utterly exhausted, it's indescribeably difficult. Sleep is so important, and it's hard to get to bed when he does (early) because when he's finally "down," I want to spend a few hours on personal time for me. Like reading, watching a movie, searching the web. But what happens is that when he wakes up in the middle of the night to get to the restroom, I have to get up, too, to make sure he finds the toilet, etc. He goes right back to sleep, as evidenced by his snoring, while I'm up for a few more hours, tossing, trying to get back into that same sleep groove. Then, of course, he's up at the crack of dawn, wanting breakfast, when I'm finally in deep sleep. The only method I have of dealing with the frustration and anger and resentment that CAN build up IS to turn to prayer. Even venting sometimes just leaves me with more frustration. I believe in honoring one's father and mother; of not returning ill-treatment with ill-treatment; all those values. Our culture seems to be more and more focused on the great ME idea. The signals are stressed over and over that "it's all about ME." And while I don't believe in submerging oneself completely in the care of others, modern culture would have one throw out everything that doesn't satisfy or gratify self in some way. This is a direct contradiction to the idea of caretaking for a demented parent. In a real sense, ME is whittled down. And all around, people are rushing about, in pursuit of their own personal idea of happiness. It is with a real sense of envy that I don't have the time and space to do the same that I regard that pursuit, to be totally honest. BUT if I'm going to do this, I just have to keep letting go of that idea. It's not part of the landscape of nurturing a parent to be that focused on self. Parents go through the same thing. I just wish our culture were more attuned to the needs of parents and other caretakers and had more offerings of support. I think "nursing facilities" which would be the kinds of places we boomers would be willing to live in ourselves at some point down the road could be the ticket. Whoever completely revamps these could make a fortune.

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spirituality Feb 7, 2010 @ 12:48 pm | delete

You know, that's precisely why I don't advise people to take this on. And the sad thing is: because you're so tired, you can't be as good a support to your dad as you'd like to be. So you're not just hurting yourself, you're also not providing him with the best care.

Or to put it more drastically: Don't you think your dad deserves someone helping him during the day, who had a decent night sleep?

I know you're actiing from the heart, but I think you're working yourself over the edge - and that's not help for him.

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mbgphoto Aug 31, 2009 @ 6:46 pm | delete

Thanks for an interesting lens. My Mom repeats herself often. She also asks the same question four or five times during a short visit. I just keep answering her and like you said keep the answer short after the first time. It helps to read about how others handle the situation. Thanks for an informative lens.

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x3xsolxdierx3x May 26, 2009 @ 11:27 am | delete

Many of my patients have Alzheimers....it's sad, and oftentimes difficult, to care for them because of the dementia......great lens and 5 stars :)

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Tipi May 15, 2009 @ 12:26 pm | delete

My grandma had Alzheimer and now an aunt has it too. It is a sad disease to watch unfolding and feeling helpless about. - Great topic and lens! :)

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spirituality May 8, 2009 @ 5:28 am | in reply to aj2008 | delete

Well, many elderly people do prefer to just sit still actually. But just like it is with kids: make them feel useful & they will come 'alive' again more. No miracles, just more alive. Bringing in kids apparently works wonders too btw.

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aj2008 May 8, 2009 @ 5:23 am | delete

Katinka and Mimi, you are both amazing people and I cannot begin to relate with what you are dealing with. I love your story Katinka about allowing your Grandmother to help with peeling the potatoes. I often think that the elderly are allowed to "just sit" because it just makes it easier for everyone else.

I look forward to seeing how this lens progresses and thank you for being so honest and open about such a difficult topic.

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GrowWear May 2, 2009 @ 3:29 am | delete

I watched a documentary the other day -- Complaints Of A Dutiful Daughter. Her mother was more progressed than your dear grandmother. At a certain point, the daughter would just say, "Yes, I am your old friend from college." "No, I haven't heard from so-and-so in years." Totally the way to go if you want to keep your loved ones happy, I believe. Why upset them with clarifications when they'll forget them ten minutes later? I truly believe that this lets them have peace -- and the caregiver, too. Nothing to be done about the sadness I would suspect. My mom is losing her memory... Not going to try to straighten her out when and if that point comes that all I would be saying over and over again to her is that "I'm your oldest daughter." Lying is the best thing in a situation like that. I have no qualms or doubts about it.