Can anyone share helpful hints that they have learned in caregiving?

I got a wireless bed alarm for my mother. there is a thin pad that goes under the bed sheet & a wireless alarm unit that can be placed anywhere in the house. So when she gets out of the bed the alarm goes off in my bedroom. That way she is not startled or upset by hearing a alarm in her room. She just thinks that I happen to be up every time she gets out of the bed!

My Dad believes his mother is alive, she died in 1987, so when he talks about her I just go with it, and anyone else he brings up that has died. I don't try to reason with him because the only reality he has is in his own mind, and I don't want to say anything that will upset him in any way if I can avoid it.

Just my two cents :)

I appreciate that some of you understand the importance of going to their world... they no longer live in ours and depending on what stage they are in, they can not retain or learn new information.... I have always'played along' when my elders think they are somewhere else, or that I am someone else.... just yesterday I was helping get Sonny dressed, this look went across his face, asked him what was wrong, " Do you think they are going to let me in ?" . I very promptly said, " I'll kick their ass if they don't".....he laughed, felt safe and protected and I had to hide the sadness on my own face.... how frightening to wake up and not know where you are and whether or not you are going to be 'accepted'.... it breaks my heart... but I spend time observing what HIS reality is and I go there with him... it is sad enough they don't know who they are, where they are, without making it more frightening for them.... they are asking about THEIR truth, not ours... it is so hard for them to have dignity at this time of their life...I just go to his world, in many ways it is a better place than the one I live in everyday....
This thread was a great idea... thanks for starting it... love and hugs....

O.K. - this is not a hint but I have to share because it relates to my mom and my previous posting about her asking about her family who have passed on already. I keep my 3 yr old granddaughter a couple days a week now after having had her full-time while her parents work since she was born, so she has been around "GaeGo" her name for my mom all her life. After all this time of being truthful with my mom about my dad being dead, yesterday, when mom asked if I'd seen him, I said, "No, I haven't" to which my granddaughter said quietly (my mom is very hard of hearing) "he died 6 years ago and is buried in Lawerenceburg" which is exactly what I usually tell my mom.

Good one, nursediana. I have a gair belt -- how do I learn the correct way to use it?

Im not sure if this has been mentioned, but all caregivers should have a GAIT BELT / TRANSFER BELT at all times. I suggest placing it close to your loved one at all times and learn how to use it properly and proper placement. This can mean the difference between a fall or not. Just FYI :-)

lostball, I'm sure you are in over your head -- most of us would be! Your mother has a serious condition that will make communicating increasingly difficult and perhaps your father has the start of some cognitive problems. This is too much for one person to handle alone, and it is even more challenging when the caretaker has serious health concerns, too.

Are you on SSI? Do you have a case manager or a social worker? That would be the place to start. If you don't currently have such a person for your own health conditions, call Social Services in your parents' county. Do not assume that they can't afford professional help. One or both of them may qualify for various services that would provide some relief for you.

I've been thinking of you and I'm worried. You sound like a very caring person and it is extremely generous of you to want to provide what your parents need. Consider your own needs, too, and look into what kinds of professional services might be available. Come back and tell us how you are doing.

My mom was diagnosed with dementia August 2011. She has been living with us since mid-December. She has lost interest in TV, reading, sewing, etc. She often just sits & stares into space. One hint that I could add is when speaking to a person like my mom, I first have to get her attention rather than just starting to talk. So I call her by name (mama) & wait for her to look at me. I then speak in a slower speed. I know us southerners already talk slow!! Anyway I speak slower & never try to discuss more that one subject at a time. After a sentence I pause & wait for her to absorb it before moving on.

My dad came to live with us 2 mos ago & it's a learning process for sure! Each day I print out a paper that says the day, date & appointments for the day. This is a BIG help. When dad is experiencing the sundown decline I put on his favorite music & that stops the rocking. A PT told me to have dad focus on something, like counting coins. You need patience, resilience, flexibility & a sense of humor to be a caregiver. Also, if you receive compensation for your care, that doesn't mean you love your mom any less. Good luck!

AnitaK, I am going to agree with your friend. (I realize that there are different views on this topic, even among professionals. I'm just giving mine.) I think it is more helpful to accept our loved one's reality and acknowledge their feelings than to honor the literal truth. As you can see, they do not learn from "the truth." It may soak in for a little while (and hurt), but then they ask the same question again. Instead of saying "Dad's been dead six years," I think I would say, "Dad's helping at the church," or "Dad went to borrow a tool," or "Dad is out of town on business." -- whatever would seem natural. Or even, if you can't bring yourself to tell a direct lie, "Dad can't be here right now." Then redirect the conversation. "Can you keep me company in the kitchen?" or "Tell me about when you met Dad."

To hear that your husband is dead when you don't know it is painful. To be told that you are so out of touch with reality that your parents have been gone decades and you don't know it is scary. Personally I don't see the value in providing this distressing truth over and over. It seems kinder and more helpful to me to accept their reality.

Please understand that I am not saying you are wrong. Just giving a different perspective.

AntiaK It sounds like you have a great grip on things-you are taking time for yourself that is so important-I also got out when I could when my husband was with us and it was great to have a support system when he died. If there is a caregivers support group at a hospital near you that would be great because you are doing great and would be a great help to other. There will be days that never seem to end so it is good if you have a friend you can call-just to have a normal conversation and let others help if they offer-maybe bringing you some home made cookies or something-it will help them also to feel useful-try to keep up with friends if only by email. Cuz on the grossed out thread keeps us laughing with his jokes-it sounds like you are a good mentor to others so keep posting.

One thing about my mom's dementia that really is hardest is that she keeps asking about family members (where are they/have they been here lately, who are deceased, i.e. her father - died 45 years ago, her mother - died 32 years ago and my dad who died 6 years ago. She doesn't recognize him in pictures and the other day when my husband came home, she thought he was my dad. I always tell her the truth, sometimes 5/6 times a day. At times she just says nothing or "I thought so" and sometimes shock or pain on her face. Weird because I ddn't see a tear when her mother or my dad died but she probably grieved in private. My friend says I just go with it but I can't do that at this point. Am interested in your thoughts.

My Mother was Dx as Early Onset Alzheimers 3 1/2 years ago, that was changed to Primary Progressive Aphasia aprox 6 weeks ago. I'm well versed on her first Dx ,now I'm lost. On good days she has questions about what is wrong. Torn between the truth and a white lie, I find myself here, looking for help. She seems advanced as she can't even spell her name. In addition I'm noticeing alot of repition in my fathers conversation. She is 70, he 71. I'm 43 and suffer Bi-Polar 1 and Borderline personality disorder, this has been VERY stressfull on me, and I'm worried abut my own Dx. Any type of suggestions to lessen my stress to focus on my parentswould be very welcome as I'm stressed and in over my head. I'm the only caregiver option and the finances won't allow a paid help. Thanks

anitaK, sounds you got a real good grip on this, more power to you! i wish i had been better prepared, im learning as i go along,so thank you for your tips, anymore would be great! thanks for sharing, you go girl!

Whatever conversation my Dad starts up, and these days it never makes sense, I have learned to just go with it and I am amazed how it helps him feel he is OK.

I play whatever part needed to fit in with wherever his mind goes. Lots of times we both end up laughing. It's so good to see him actually enjoy himself on occasion.

I know it's hard and heartbreaking most times, so I really cherish the good times we can have together.

Thank you all for your hints and supportive words. Although I am a newbie to this site, my mom has been here with me 4 years and I learn or think of new ways to make things easier as we go along and I always wonder, "why didn't I already think of this". I have really learned to take care of myself by yoga twice a week and working out at the gym. I get a sitter in several times a week. I also teach cake decorating more or less as a hobby that gets me out of the house and talking with people other than my husband. Because my mom has been diagnosed as "failure to thrive" (weight loss - she only drinks Ensures) we have hospice services which involve a nurse coming by once a week and an aide to bathe/shower her 3 times a week.

ANITA:

Welcome to the Family girl!

You're planning ahead and managing your time nicely, which relieves some of the stress. Sometimes, no matter how well prepared you are, unexpected things happen. Don't bottle it up and simmer in the misery. Log onto AgingCare and scream with us. ... And no matter what, try to smile. Even if it hurts.

Ok, I have one. I got the idea when my Dad said something during a counseling session about having to look up to check an appointment on the wall calendar. You see, both of my parents are in wheelchairs and although I keep a wall calendar with all of their appointments, it never occurred to me that it wasn't very parent friendly. From their perspective, it was just another annoyance in their daily lives. So, my son moved the calendar halfway down the wall so my parents can actually see it. We got our wall calendar at an office supply store so it's got big numbers and it's laminated so we can use a dry erase marker.

Dear Anita,
First, give care to your disabled loved one because you love them. If you do it for the money or other benefit, you will find yourself woefully underpaid. Do your best and forgive yourself for being imperfect, and forgive your loved one when they poop in your hand and say they're paying you by doing so. You are in a crazy situation lacking the tools and resources you need, and no one cares who can help you much. That, as they say in the caregiving business, is the job. You will find people like us at websites like this one who understand what you're going through, feel your pain, wish they could help and have problems that put yours to shame. Sadly, we cannot help you. Except to applaud the work you do and respect and support you for doing it. Give yourself the support and encouragement you need. Good Luck. God Bless You.

My mother has shared some of the things that upset her the most. Almost all of them include some form of perceived disrespect due to her age. She does not like to be called "dear" or other endearments by strangers. Mom also becomes frustrated when people automatically think she needs the handicapped access to any building. She thinks she can make that decision herself. Basically,she wants to be treated as the adult she is. She knows she has short term memory issues and will admit it when she needs to ask a question again. The simple advice she has given me is to think of her as she thought of us when we were at college: Most of the time we had good judgement ,but sometimes she needed to step in and help. Mom is difficult and needs much more help than she wants to admit, but I understand her need for respect. Good luck!

i like that doorstop idea, id put a rope on it so i wouldnt have to reach back down to pick it up, but great idea...
be creative, trust me it will save your sanity!
on another note, how rude of staff to see you struggle with a door and do nothing!! id file a complaint, not that it would help. but how rude! they are there to help people, but too lazy to help a lady with a door? unreal....people!! uggghhh

Something we found very helpful with the shower is a weighted shower curtain it helps with water overspray. The biggest thing to help is I changed the hand held shower head from our RV to the house. It has a shutoff on the shower head, Instead of turning the water on and off and trying to adjust it every time. Just becareful you don't aim it at the person when you turn it on as the hot water comes out first until the mixing valve kicks in. Now my husband has to get us a new shower head for the RV but that's eazy enough. I also keep a folder of all the records and carry it if we need to go someplace. All her meds are listed on the back of her mediset case which also travels with us.

Ooo .. I like the doorstop idea. I have recently taken Ma to several appointments and it is REALLY a struggle to open and hold a door and push the wheelchair through at the same time. That is a good idea!

I keep a stack of essential papers in a plastic acordian folder with an elastic cord. It includes a list of loved one's meds and dosage, medical history summar, a checklist of baseline ADLs, copy of POA document, and healthcare directive. Because LO's disease is not widely known even in the medical community it also includes some basic information about the disease. I update it before each trip and take it along. The closed sturdy folder helps ensure the papers stay together. I also grab the folder to take along on medical emergency trips. When they start asking questons in the ER and I'm pretty frazzled I can just hand them the folder and what they need is there.

AnitaK,

Welcome to AgingCare.com. We are glad you found our site and I hope you find what you are looking for here. Our caregiving community is awesome and they show a lot of support to each other. I am sure you will find the caregiving connections you are looking for.

I have attached to articles that have been written by our editors. These should help you as you begin or continue through your caregiving journey.

If You Knew Then What You Know Now: Hindsight for Caregivers
https://www.agingcare.com/articles/about-caregiving-in-hindsight-147804.htm

and

New Caregivers: What to Expect
https://www.agingcare.com/articles/caregiver-tips-taking-care-elderly-parents-146706.htm

Best of Luck,

Karie H.
AgingCare.com Team