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She is bored. Giving someone magazines or turning on the TV isn't the answer. Take her out. Sing a song and dance with her. Bring her into the kitchen and make her something that she used to like ...Read More

She is bored. Giving someone magazines or turning on the TV isn't the answer. Take her out. Sing a song and dance with her. Bring her into the kitchen and make her something that she used to like while talking. Go outside - go for a walk, go for a drive, see other human beings with her.

All of the products you are using are actually sealing a smell into the fibers. Use a washing machine cleaning solution and run one cycle with NO CLOTHES, following the cleaner instructions. Clean o ...Read More

All of the products you are using are actually sealing a smell into the fibers. Use a washing machine cleaning solution and run one cycle with NO CLOTHES, following the cleaner instructions. Clean out your dryer trap and if the dryer hose is more than a year old, replace it with a new one.

Now - do not pack the machine. Use 1 cup of plain old borax, 1/2 the usual amount of a good organic detergent. Although more expensive, the typical commercial & cheaper generic detergents rely on salts and do not clean as well, they cover up smells with filler labeled as "scent" and make the problem continue. Use HOT water (above 150 degrees - you will have to kick up your hot water heater about 1/2 hr before doing laundry but it is worth it). Rinse twice - add 1 cup of vinegar into the second rinse. Use a quality organic dryer sheet (like Mrs Meyers) if you want softness & scent.

The smell is due to a combination of crud that is attached to the fibers and all of the excess solutions you are using. It may take a few washes but if you do this everytime you will be surprised at how nice they come out - and suddenly it will be obvious it's a product build up & bacteria smell - not the person. You might also invest in a Ultraviolet Light wand and run it over upholstered surfaces & bedding before & after you vaccumn. - yep - bacteria buildup smells. so does mildew, mold and lysol just covers it up. Good luck

A daughter who has been there - done that and learned the hard way. :-)

You learn alot about people and you learn alot about yourself when you have a parent who obviously has dementia in a wheelchair. For the most part I take her with me on all shopping &errands and we g ...Read More

You learn alot about people and you learn alot about yourself when you have a parent who obviously has dementia in a wheelchair. For the most part I take her with me on all shopping &errands and we go on outings daily. I've met alot of people who were glad to have her and they do come up, especially moms with kids and talk to her. True there have been negatives, but the one thing I found disturbing is when people assume you are "paid help".

We were at a imaging center for a test that required her to drink a large glass of liquid before the CT scan. I had to coax her and she really was resistant, although some people helped out with kind encouragement and we got her a straw. Finally when she finished the glass she gave me a smile and a big hug and I hugged her back proudly congratulating her. At that point one woman who had been looking on with a smile looked confused and said - oh my god, your're her daughter.......you were so nice, how do you manage to deal with that, I'd never do that for my mom. I found it incredibly sad and a bit ironic.

Other than that I rarely care what anyone says or thinks that is negative. If they are not nice - or there is a problem w/ ADA I don't let it get to me, we just joke & keep on going.

This is great info & I wish all caregivers were given a copy of this article when they first started caring for a loved one. They are words to live by and by having the same insights as the article h ...Read More

This is great info & I wish all caregivers were given a copy of this article when they first started caring for a loved one. They are words to live by and by having the same insights as the article has made my 9 going on 10 years of solo caregiving for a parent with dementia so much easier.

It doesn't make what you are dealing with any better, but it does make it easier. I was fortunate in that I actually liked my mom and we would have probably been friends if she were not my mom. Yes, I sometimes miss her younger self - but I wouldn't change my decision to care for her even today. It is all about attitude and understanding that once you have a good day, and your loved one has a good day, you'll find the next day easier. Sometimes good enough is - and sometimes a hug is worth more than the angst of denying that your parent can change their behavior. Great article !!!

I think that the title is misleading and as a result people may be a bit disappointed without recognizing that the key to the article is to re-frame how you view yourself in relation to the universe o ...Read More

I think that the title is misleading and as a result people may be a bit disappointed without recognizing that the key to the article is to re-frame how you view yourself in relation to the universe of caring for another.

I am single and the sole caregiver of my mom. I don't have people signing on to 'help' and I certainly don't get down time, yet I've managed in part because of my view of what I am doing. I am an oldest, was in mgmt and used to being the problem solver. Now I juggle life w/ my most important person (mom) which is unpredictable and requires constant vigilance with working from home. The first thing I did was 'manage' to learn my intuition and bond to her was my guide. The rest fell into line - whether it is advocating for her healthcare, handling her ADL's, bringing her along despite it 'not being done' - and in the process am not only a better caregiver for her, but have also broken through some common barriers of what a caregiver can & can't do. Being your own CEO means having the courage to steer your own boat and not wait for others, but rather sell them on how to work with you. I hope perhaps some of the readers might read this again with a fresh perspective and take heart - it may be thankless, but the whole point is to remember to thank ourselves.

I'm sorry I hit submit too soon. Use regular commercial kitty litter in the bag. You can also pour a layer of kitty litter in the bottom of the trashcan. Most have a fairly good result.
 ...Read More

I'm sorry I hit submit too soon. Use regular commercial kitty litter in the bag. You can also pour a layer of kitty litter in the bottom of the trashcan. Most have a fairly good result.

Another thing you might consider is her diet. What is she eating & can she tolerate probiotics? If she has a compact stool then you can dispose of it in the toilet & continue to dispose of the pads in a bag. For those who want to be environmentally friendly, there are bags for doggie pick up that are large enough for adult diapers, but they are a bit pricey.

Those are all great answers. I'd like to share a free resource - identity theft and taking advantage of elders is an epidemic. Because it takes effort, and time along with emotions for the victim, c ...Read More

Those are all great answers. I'd like to share a free resource - identity theft and taking advantage of elders is an epidemic. Because it takes effort, and time along with emotions for the victim, co-victims (in this case the family handling the issue) there are so many steps. I can recommend the Identity Theft Resource Center (http://www.idtheftcenter.org/map.html) which is a non-profit and has information and sample forms/letters as well as an 800 number you may call to get advice. The volunteers have all "been there" and are helpful and kind, while giving you invaluable advice the credit card industry and sometimes local law enforcement won't. There are sections on your options on how to handle the issue if it is a family member who is the perpetrator. I recommend it highly and hope everyone on this site will keep it as a resource.

Good luck - sometimes the first notice that something is wrong will lead to much more that has been hidden. Stay strong and don't hesitate to share what you learn while you deal with this problem.

The appropriate place to start is the police department and elder abuse task force for your state.

Thanks for your long - well thought out take on personality & caregiving.

That is a good question. Many law enforcement agencies wrongly believe that financial elder abuse is "civil". Rarely are outsiders able to distinquish between a heated exchange due to behaviour or ...Read More

That is a good question. Many law enforcement agencies wrongly believe that financial elder abuse is "civil". Rarely are outsiders able to distinquish between a heated exchange due to behaviour or caregiver burnout, or actual abuse - which is just as heinous as child abuse. Heathcare workers are mandated reporters, but what if the elder never sees the doctor when they have bruises?

Like child abuse it is ugly and rarely understood for the devastating crime that it is. It's worth of discussion - and is important to be kept separate from those threads that seem to revolve around abusive elders - it is not the same thing.

Hi there - I am a 24/7 sole caregiver - - done it for 7 years now. Ask away. The best advice I can give you is keep yourself upbeat and don't get pulled into pity parties - especially online. It is ...Read More

Hi there - I am a 24/7 sole caregiver - - done it for 7 years now. Ask away. The best advice I can give you is keep yourself upbeat and don't get pulled into pity parties - especially online. It is not that hard to remain sane if you remember to laugh, and move on. Whatever mood you reinforce will be the one that sticks. That means if you feel down, thats ok - but if you constantly 'vent' about how hard everything is, then at one point it will become too hard. You didn't share anything personal - so please feel free & no one will judge you. Edvierjar is very wise & his advice is good. I can tell you though that being the only caregiver happens to alot of us. You can also take this time to learn alot about yourself - there is a level of emotional honesty and insights that you will reach when you are caring for someone else. Take that as a blessing and use the time to really understand yourself and where you want to grow.

If you remember the reasons why you have made the choice to do this, and participate in disease specific forums in addition to this site you will feel better. (ie. - Alzheimers Association has a live help-line, as do other groups). Oh, and although it is easier said than done, try to keep good consistent sleep and meal schedules for yourself - that messes up mood and stresses your body. Tulsi (holy basil) tea is also a good beverage - try to balance what you eat & stay away from all those lovely comfort foods containing Fat Sugar & Salt and stick with a moderate diet - there are many online sources for healthy menus & recipes.too.

Hi Lon,

I've not been here a while, so its nice to 'meet you'. Checked out your site - your assessment of "caregiver syndrome" is interesting. No doubt many do fit the profile on this sit ...Read More

Hi Lon,

I've not been here a while, so its nice to 'meet you'. Checked out your site - your assessment of "caregiver syndrome" is interesting. No doubt many do fit the profile on this site. Have you noticed a correlation between BM type and the "issues" that seem to be become the dominant theme in their caregiving situtations? I'd enjoy hearing your thoughts since you have so much experience

As an add on to everyone's good advice about FLMA etc, you would be wise to polish your resume & start looking for a more family friendly company - either big or small. The gov can only protect you s ...Read More

As an add on to everyone's good advice about FLMA etc, you would be wise to polish your resume & start looking for a more family friendly company - either big or small. The gov can only protect you so far and reality says that with an attitude like that it is only a matter of time before you are forced to make choices that you may not want to make, or have them made for you - even replaced. Don't tell them, but do go online & start looking. Talking to you that way is a red flag; and if you are already under stress, then it will make your life even harder during a tough time. You didn't say what you do, what type of co, or what your status is (full, p/t, ??) but regardless you must be protective for yourself, and by extension even your parents.
When I was first juggling a desperately ill parent, and other issues, I was approached by a company that had had my resume on file. When I interviewed they offered me the job, and then made the off hand comment about putting my mom in a home since I would be so busy. Needless to say I didn't accept that job, and have managed to find other clients that allow me to keep her at my home. Tough economies bring out the worst sometimes, but don't let them scare you into being afraid no one else will hire you. How many others out there have gone through this?

Try Tulsi tea - its also the same as a the herb called "holy basil" - works for seniors with no appetite. Got the tip from a nurse.

If you are in sober living, someone must be there who ha ...Read More

Try Tulsi tea - its also the same as a the herb called "holy basil" - works for seniors with no appetite. Got the tip from a nurse.

If you are in sober living, someone must be there who has info to help you with the nutritional aspect - maybe ensure protein shakes, or something that doesn't require effort.

Hey carol - liked what you wrote. Glad that someone as smart as you is on this board - great picture too. All of us caregivers with parents at home are doing the sisyphus cat ... printed out your p ...Read More

Hey carol - liked what you wrote. Glad that someone as smart as you is on this board - great picture too. All of us caregivers with parents at home are doing the sisyphus cat ... printed out your picture & posted next to my pc - kind of puts it all in perspective.

The whole financial elderabuse thing sucks - did your sib's ever "get" that what they did was wrong? Its personal with me - went through that too with a sibling that was an overbearing narcisisstic user - butter wouldn't melt in her mouth and she was expert at slamming anyone who "defied" her authority. Even years later, she doesn't get that she was wrong....sure would like to hear your whole story - and how it turned out. Sucks that you are 'alloted' $10 per day - know how much you must be doing caring for Alz parent.

Thanks Nan, I'll check it out when I get free time to just browse the net. I can't believe anyone would stand for euthanasia as you've described it. Its one thing to have hospice and not prolong suf ...Read More

Thanks Nan, I'll check it out when I get free time to just browse the net. I can't believe anyone would stand for euthanasia as you've described it. Its one thing to have hospice and not prolong suffering - the rest that you said - I dont doubt you read it, doesn't make sense, morally or leglly for any country. Sounds more like Soylent Green if you remember that oldie from the 70's.
I always appreciate learning something new - maybe we should have a food for thought thread that is for new and useful news we can use whether it is a site like you mentioned or other issue that matters to us, anything as long as it doesnt' tiptoe into religion - that seems to stall many conversations....as a caregiver I'm looking to keep my mind active & staying in touch with the world.

If someone is negative, you will never change them. It might be really cathartic printing them out, why not share them with someone who will understand and appreciate you for it - what you need is a ...Read More

If someone is negative, you will never change them. It might be really cathartic printing them out, why not share them with someone who will understand and appreciate you for it - what you need is a hug. You will never change your family, sad to say.

There is an old saying - the definition of insanity is doing the same thing over and over again and expecting different results. You aren't crazy, but you are a caregiver and we tend to try the same things over & over too .....so - welcome to the club...get what validation you can from the articles, hang on sites like this and look for someone that will give you a real hug and appreciate what you do. Best advice I can give from experience is to ignore those who don't cherish you and keep smiling. The more you laugh & smile the healthier and happier you will feel, so even if you have to push yourself, don't stay down - you have to ask yourself every day "what do I need to nurture myself & keep on going" - because ultimately the only one who can truly care for you is yourself. Its not easy whether your family is dysfuntional - or your family knows how to put the fun in dysfunctional. So be kind to yourself & be well -

The best way to deal with depression is to separate the clinical side of depression. That means ruling things out that are physical. Try for a check up regardless of how unmotivated you are. As far ...Read More

The best way to deal with depression is to separate the clinical side of depression. That means ruling things out that are physical. Try for a check up regardless of how unmotivated you are. As far as the mental aspects of depression - at this point I hope that there is no stigma to a treatable condition. Medications for depression are not "happy pills" - SSRI's are in many cases lifesavers for some people who have an imbalance and benefit the same way diabetics do from proper use of insulin.

Some tricks that I use personally is to stay goal focused, and not to dwell on anything that I cannot change. That type of self talk is a good way to sabotage your day. You know the old adage, misery loves company - it is true. Although we all have bad moments, don't fall into the trap of endlessly discussing why something is unfair, sad, crazy-making (endless list).

I have been a solo caregiver for seven years. I occasionally participate on this board because I've managed to deal with alot, and its hard work - depression makes it harder still. So when I comment, I am not painting a rosy picture, nor am I advising anyone to be in denial of their problems. I am, however suggesting that how you manage your expectations is likely to be more helpful than complaining about things you cannot change.

A person with Alzheimers is not in a position to know that you have issues - let alone work out stuff from the past. So when I say suck it up & let it go - you will feel better, I earned the right to say it because I have done it. If I feel helpless, then I figure out where I can regain a bit of control - either in researching a condition, resolving to laugh while cleaning up poop instead of crying, or realizing that my choice of being a caregiver for a family member means I probably won't be walking down the streets of Paris this year or meeting the man of my dreams. These dreams weren't stolen - I wasn't forced, they are a mature choice - the same ones we make when we show up for work rather than going to the movies, or doing our homework instead of playing video games. If old friends drop away, then so be it. Never hang on to anything, that does not nurture you or make you happy - that means self-image too.

Be kind to yourself, admit what you need for you to thrive may not be what someone else thinks you need. Realize that self-talk can hurt or help - your choice, choose wisely. Talk to a Dr. about meds if you need them - don't tell anyone else. Its not them that is feeling your pain. Realize that lifting your mood does not change your life - that is still up to you.

Do things that make you laugh. Dance to music you like every day. Eat healthy food and sleep - maybe the luxury for you would be hire a sitter and sleep for 8 hrs rather than being up every 2 to check on your loved one - that kills your mood.

Appreciate the fact that the real world is always better than online - go outside and get fresh air & sun every day for even a little bit.

In other words, practice a little every day in managing your reactions - not responses - to all of the crappy stressful stuff that you can't control. Takes work to get your sense of humour back, but it is worth it - so after you have had a good cry, have a good laugh if you can, its good for your heart and soul.

Last night my parent when I was putting my parent to bed I felt pretty beat up from the week which had been pretty challenging for us both. She said to me - never mind don't you know that when you wake up in the morning, the devil always says "oh crap! she's up!"

It made my day (night), I laughed and yes, today I am back to myself again. I think everyone on this board is so deserving of wishes come true, so I hope my reminder about laughter and hope helps ....

writing it helped me.

Tenesse -
Congratulations - you havefast-forwarded to "wisdom" which is ageless. There is nothing wrong with being comfortable socializing with seniors. Once you have been a caregiver for a wh ...Read More

Tenesse -
Congratulations - you havefast-forwarded to "wisdom" which is ageless. There is nothing wrong with being comfortable socializing with seniors. Once you have been a caregiver for a while, you acquire insights and wisdom beyond your years. I am pointing this out because when you have put in 24/7 care for alot of years you may also feel tired, isolated & out of it. That is normal - much like the 20 year old who joins the military & goes off to war - when he returns at 23 seems much older. Caregivers go through a similar experience. Some of us have learned to find the silver lining, some are on the path but have not had the realization yet, because of the life-change and stress. But that is what makes all of us connected regardless of who we are caring for or our relationships with them.

In our society there is still alot of ageism - somehow we started valuing youth and marginalizing the elderly. I am glad that you feel comfortable with people who have gotten past the folly and predjudice of youth and are comfortable being who they are and enjoying what is right now. As long as you are enjoying yourself and feel at peace, then it doesn't matter what the age of the people you are having fun with is.

Hope you have a lovely day -

Lilliput:

There is an aging in place movement and many states are considering PACE programs. You are wise to begin researching - dear lindsey is so king to post the articles on this board. ...Read More

Lilliput:

There is an aging in place movement and many states are considering PACE programs. You are wise to begin researching - dear lindsey is so king to post the articles on this board. You can also find alot of information on modifications to the home and even tips and tricks others use to accomplish it. Not everything requires the services of LTC or home health agencies. Beware of non-medical agencies that offer services like "remembering and opening mail". Instead, you might want to start with talking to a geriatrician who is involved with the movement.

Concretechange.org is a group that deals with universal design and has good links and advice. It was started by a woman who found handicapped accessiblity was the key for her own quality of life.

I can only add that I have found in caregiving other than the usual learning curve and realities of dealing with help & medical , personal assistance the only real hurdle is attitude. If you don't let the LTC industry sell you on 'the only option', and get along well with your parents, then you will be amazed at how many others are also out there. Safety is a concern of course, but usually that can be addressed in many ways, including simple modifications, up to having a companion. A person can fall at a nursing home just as easily as at home - depends on how much attention is paid and thought given to prevention.

I will come back to this board tomorrow with some other resource links. Good for you asking the question - it is the same one an entire generation of baby boomers will be asking for themselves shortly.

Cat

To answer your question - yes. There are many, but you need to go to sites about AIP and the liveability movement. There you will find alot of information and like minded individuals. You might als ...Read More

To answer your question - yes. There are many, but you need to go to sites about AIP and the liveability movement. There you will find alot of information and like minded individuals. You might also check with non-profit family caregiver associations and disease specific groups. Many people manage the entire aging process for their parents as caregivers right through to hospice and end of life issues. There are support networks on those sites that attract a different following and can offer you advice and support if you chose to do so.

If you want information on doing it successfully, I have and am still sane and happy and able to offer concrete advice having done it over 7 years now. No regrets although my parent has cognitive issues as well as health issues.

Yes, people with dementia often can seem lucid and carry on conversations and act normally. There is no playbook for what is and isn't normal in dementia. If she hallucinates or seems otherwise dist ...Read More

Yes, people with dementia often can seem lucid and carry on conversations and act normally. There is no playbook for what is and isn't normal in dementia. If she hallucinates or seems otherwise distracted - or rambling check for UTI's, nutritional deficiencies, dehydration, possible medication side effects and even a dental problem. Smaller health problems can have a bigger effect on cognition. Likewise disturbed sleep, or other changes to routine.

The person with dementia is handicapped with an impairment but still deserving of every opportunity to be treated and spoken to as you normally would, with recent discoveries, what science now documents about about brain plasticity it is worth keeping them in the loop as possible. Takes work but is worth it.

Olive, deepest sympathies for all you are going through. Call medicare or his medicare advantage provider to get the facts on how many days he has for skilled care. You might also speak to the hospi ...Read More

Olive, deepest sympathies for all you are going through. Call medicare or his medicare advantage provider to get the facts on how many days he has for skilled care. You might also speak to the hospital discharge planner and you might be able to get some help with the nursing homes. It can feel very mercenary this healthcare system of ours - but many people working in the system are sympathetic if you reach out. If the discharge planner is not in your corner, talk to the hospital chaplain & ask for referrals, referrals, referrals until you find a few advocates to help you with this mess. I feel for you, it is exhausting - but there will be a light at the end of the tunnel

Gebaa 00, to clarify Medicaid goes after the money. Olive was concerned they would go after her as she signed the admission forms. Medicaid would not go after her personally instead they would follow her father's money to the person who has it, in this case her sister. Sadly this is not uncommon, which is why Medicare has these rules.

Hope that clarifies what I wrote earlier. I notice you are new on the board. Welcome! when you have time fill out your profile with your story. This is a nurturing environment for all caregivers, so no need to be shy!

Your mother can elect to take her benefit, or her deceased husbands benefit - whichever is larger. She cannot however take both. So the answer is yes, she can get his benefit after he passes.
 ...Read More

Your mother can elect to take her benefit, or her deceased husbands benefit - whichever is larger. She cannot however take both. So the answer is yes, she can get his benefit after he passes.

Call SSA and a rep can answer any questions you might have on how to do it.

I think we all feel your pain and sense of betrayal. For those of us who have been mocked, discounted or treated with less than respect know that it is a bad feeling indeed, so you are completely jus ...Read More

I think we all feel your pain and sense of betrayal. For those of us who have been mocked, discounted or treated with less than respect know that it is a bad feeling indeed, so you are completely justified in your feelings. I just hope that you will give it some cool down time - speaking in haste or anger can hurt rather than help. Just focus on your relationship with your dad at present, and try to let it slide for now. We all have to bite our tongues from time to time, especially with those who do not think about others feelings.

Everyone handles stress and illness differently. What might be distressing and "gallow humor" to you, may be their way of hoping he will "get better and we can all laugh". Each to their own. Ask your brother what he thinks. As a doctor he has probably seem alot of different coping behaviors, and might have some insight. Certainly none of us on this board can really tell not knowing your family or the situtation.

Seeing someone in ICU is usually not a good event. But try for now to get through what is going on with your dad, and put it in perspective later. When tempers run high when people are sick it is always better to give the benefit of a doubt and keep the family together during tough times. When my mom was in the ICU many years ago on New Years we all had a toast with apple juice and took pictures (with the nurses blessing). To this day when I look at the pictures in the album I see that we weren't being frivolous, or silly - and it is a lasting memory of what we went through. My mom recovered, and actually did get a kick out of the pictures later.

Hang in there, be kind to yourself.