When my Mom was still living with us, to remind her when we had to leave for an appointment, I used a plastic teaching clock that I ordered from Walmart. It worked like a charm, and I could easily reset it for each new appointment. It helped save my sanity, and she was able to handle getting ready "on time" by herself.
Love your comment Midkid. When I got stuck in the caregiver role I drove myself nuts about the dirty house, old beat up coach, appliances from the 70s, (Why replace it. It works fine!). I have managed to get some stuff done like carpet cleaning and a new recliner for Dad but I've decided if they're ok with nasty old stuff why should I give a sh......!
My tip for today:
Fibbing and Oscar caliber acting.
My Dad has dementia. He's stuck around 1970. Everything is fine. Just got that couch the other day. (1969). They have money but dad is still on a 1960 budget when he made about $4 per hour. So I have learned to construct little one act plays to get basic stuff done. Dad will always bite if he smells a great deal.
HEY DAD, THIS OLD FRIEND OF MINE DOES CARPET CLEANING. HE WANTS TO STOP BY AND USE UP THE REST OF HIS TANK FROM ANOTHER JOB. HE'LL BE HERE AT 2. NO CHARGE?
Worked like a charm. I had clued the guy in and he played along perfectly. Even fooled mom and she's still pretty sharp.
Notice that I don't ask him for permission, just set it up and present it as FREE STUFF. A similar bit of theater got him to a podiatrist, a new recliner (Buy one get one free deal. This was actually true. I put the free one in the spare room for me when I visit so I can have an adult beverage without getting the evil eye)
I hear folks say, OH I HATE TO LIE TO MOM........Gotta get over that if you're dealing with dementia.
Always be on the lookout for the possible side effects of medications your loved one is taking. On so many occasions I was the one having to deal with the adverse affects of anxiety meds. Just because the doctor prescribes the meds doesn't mean it's the right one for your loved one.
Hugs and kisses and doting on your loved one does wonders when they're being irrational or stubborn for their own good. Sometimes I just hold my mom's hand and I say I love you and responds positively.
I learned not to stress over the irrational stuff my mom said or did because I found her mind could be reset on a dime. When she refused to eat just to be stubborn, I'd take her plate away, return with same plate a few minutes later as if I was giving it to her for the first time - "its dinner time, mom!" - and she would eat. I found I could do the same resetting for most situation successfully without fighting or arguing with her. I taught everyone who helps care for her the same lesson and it has really helped all of us.
Diagnose and treat low bone density (osteopenia/osteoporosis) ideally before the fracture, but after the fracture is better than never. And keep people moving and weight bearing if it is at all possible - sitting and doing nothing INCREASES aches and pains big time.
Cherish the moments you have with them. Someday you'll do anything to hear them repeat that question or story you've heard a million times before again.
Buy a pill machine to dispense their medication. I used Med-ready for my mother. They cost about $150 and hold 28 doses. So if they need meds twice a day you can set it and forget about it for 14 days. It will beep until they push it open and shut it off. Just always make sure when you close it and lock it that you have the door closed and the tab pushed all the way back or it won't shut off. It allowed me to keep my mom in her home until she was 90! And she would be taking the right meds at the right time. It is a lifesaver. You can rent them for about 30 dollars a month or buy them.
I say exercise. If I make time for me to exercise I feel so much better and my stress level is so much lower. When my mom moved in I joined a Zumba class, then a weight lifting circuit, then BudaKhi and now kettle bells. I long distant walk when weather permits and stationery bike when I can't get outside. When my doctor asked how I fit all that in ... I said I figured I would take care of me so I can take care of mom and my husband. My husband watches mom when's I go to class and I take care of them both when I am home. It sounds self centered, but I need to be strong for them and for myself. I don't watch TV so this is my way to cope.
Each day is a new day. Expect the unexpected. Be willing to think of new things to help with him walking, eating, what if he falls what do I do, showering, etc. There is a lot of healthcare devices to help care for your loved one. A transfer belt is a necessity. Pads (washable) on the bed to catch incontinences so you do not have to change the whole bed. Take care of yourself, your health is very important so that you can care for your loved one. If possible get out to shop, spend some time for yourself.
Lot's of great tips here: Here are some of mine... Take notes, when you go to the doctor you can go over some of the things you noticed or even if you feel it's okay or normal -- the doctor may notice something and adjust the medications or look at the situation differently and help. This is especially necessary when someone has dementia, incontinent, and very high level of pain threshold. So yeah, pay attention to the face, my mom will very rarely complain of pain, but when I see her PAIN face, I let the doctor know and he even says that as peple age they may not react to pain so this is VERY important. Ask if they need to be changed, my mom will watch her TV shows and will wait and so forgets that she needs changing. Every couple of hours is good or every time you've been to the restroom for yourself and she hasn't been changed. Good time to ask. Sometimes she gets mad, but when I have her freshened up, I'll ask doesn't that feel better? She'll smile and say yes.
I just read every single comment. Thank you so much, everyone! Loads of good ideas, truths, and loving ways to do things. I may even print this out...and I guess I'm not a "newbie" as I've been doing this for a bit over 4 years with my now 84 year old mom, but often I do feel like a newbie, that's for sure! Again, thank you all for taking the time to write all of these wonderful tips based on your experiences! Blessings, Janet
One of the biggest needs of a person with dementia is to feel safe. Not feeling safe causes anger and paranoia. I tell my husband that I will keep him safe, and that I will always take care of him. Sometimes that helps.
"Admit defeat and grant the victory to others." My therapist tells me that's a Buddhist saying.
People just naturally want to "win" interactions, but that doesn't work out too well when dealing with dementia. After disagreeing a few times, come to your senses and say, "Now that I think about it, you ARE right. There were three children yelling in the kitchen. I gave them cookies and they left."
Hopefully, you will have discussed, previously, with your parent(s) matters to do with aging and have all consulted with an eldercare lawyer to do the paperwork. Wills. Transfer deed of house to children (with life tenancy). Durable power of attorney. Living Will. All that boring legal stuff, done in early days, (because once the dementia kicks in, there is a 5 year lookback period if they need to get on Medicaid). I know it's hard to determine what time of life this should be done, but I so worry about the 5 year lookback.... My mother had to revise her will when she still had mild dementia, we went to the lawyer and had a lovely visit, and then they asked I step outside while they talked to mom alone! My palms were sweating, believe me, I thought for sure mom was in there telling them about the people from the tv shows who were living in her basement! But all went well. We got there in the nick of time, I think.
# 88?? Someone's comments reminded me of all the wonderful adaptive devices out there, so many that most of us never dreamed were available. If you are having a problem with something chances are someone has invented a solution for it, everything from simple adaptive dinnerware like nosey cups and plate bumpers to sophisticated devices to help with transfers and to get someone up off the floor. Years ago I was given a catalogue from a supplier and I was amazed. I doubt anyone prints catalogues any more but spending time trolling through some web sites can be worth your time.
We must remember to never correct an Alzheimer's or Demensia Sufferer, but rather cajole Them in a nice way. I made that mistake with My Por Mother, and I never repeated My mistake again. There's so much I did not know since I began Caring as a Novice Who hadn't a clue, but like so many of You Carers, We became Carers out of Love.
Aging Care is wonderful in answering many questions. Another web site is Alzheimer's Reading Room. It also has a lot of tips on what to do. Laugh a lot and don't take things so seriously.
I just printed out a Caregiver Journal by "The Brookdale retirement program" and they can help us to face the day. Also, since I am a Christian who loves the Lord Jesus Christ, it is my privilege to be an official Care Partner with the Assisted Living personnel here at Go Ye Village in Tahlequah, OK. The opportunity is a challenge but God is faithful. We have a memory care support group that meets to help those who are the care partners. There is help, so try to find it. Remember the promise "to have and to hold from this day forward"? Never did it mean to just be having and holding when times were all okay. But "before God and man till death do us part". My wife wanted to move to AL over two years ago and she is happy there, but at times is NOT happy, what does that mean? I try my best to not tell her everything since she can't handle that so I try to tell her the good things when it is in her best interest and mine. Learning to lean on Jesus is my best advice for anyone who has to face the disease of dementia in a care partner setting.
Some of these have been stated I think in some way: 1. Therapeutic lying 2. Learn to take care of yourself in this Journey 3. Repeat to yourself-"it is the Disease" when things happen 4. Make list of things you would like help with no matter how small & when people ask you how can they help-hand them the list and ask them to pick something on the list. 5. Join a support group-if possible in your area 6. Do not use logic with your person (even though we want to) 7. Understand that you will at times get frustrated and upset 8. No the difference between guilt and regret: Guilt=is when we do something intentionally that may cause some kind of harm. Regret=Is when we wish we would of done something differently or handle something differently. 9. Work on positive thoughts and not negative thoughts (Example: This Caregiving is hard I just do not feel successful-negative thought; Positive Thought=This Caregiving is hard and I am doing the best I can to take care of my loved one) 10. The Care Receiver may react to your facial expression or the tone of your voice as appose to what you are saying-Smile (when you do not feel like it) pleasant voice(even when you feel like it). 11. Be creative and find and learn different ways of doing things.
I know I will be jumped on with both feet from all sides, but....this will not last forever. And when you just can NOT do it any more, you don't have to.
All of these comments are spot on and so helpful - for both newbies learning to deal with a new diagnosis of a spouse or a parent and for those of us who have been dealing with all sorts of dementia problems with relatives for years.
I would add two things to all the comments above (and these may have already been stated; kudos to those who may have already posted:
1. A routine. I found that a daily routine that could be followed as much as possible helped my dad who had Pick's disease and my mom who has dementia deal better with getting through the day. I don't know how he knew it but if I missed his usual afternoon ice cream at 3 p.m., he'd call me on it at 3:02 p.m.! He couldn't tell time either analog (?right word) or digitally but he knew when he was supposed to have ice cream! 2. Argumentative? Redirection. I was my daddy's little girl and it was hard but I learned that it was useless to argue with him about what he was supposed to do or when. I kept a couple of old family albums nearby and would pull one out and ask him about a couple of pictures. We'd talk a bit and then I could get him to take his meds or whatever needed to be done. They quickly forget everything that happened seconds before. 3. Comments about important papers. I worked in hospitals and doctors' offices for 30+ years. One thing I learned and have shared with many friends that a: have a copy of all important documents in a clear plastic bag attached to the refrigerator or somewhere where the patient can't get it but emergency personnel can. b. Every family member who has contact with your relative should have copies of the same material you give the EMTs. c. Every doctor and hospital that your relative visits should also have the same material. It is impossible for you to remember every drug, every diagnosis, and every allergy that your loved one has when you're in a crisis mode. Those patients with long-term problems, such as heart problems, lung problems, etc., will probably visit both hospital ERs and doctors' offices several times before they pass so be prepared. Everyone will love you for it. 4. Be prepared to describe recent (current) problems, the reason you called an ambulance, the reason for a routine office visit: Routine office visit: No changes since last visit? If so, be prepared to relay what kinds of changes (decrease in memory more pronounced, not recognizing you or other family members that he knew before the last office visit. Emergency calls: Be prepared to tell the EMTs/doc about the problem(s) that made you call the ambulance today that couldn't wait until being seen tomorrow: Increased dizziness with a fall/broken bone/unable to control patient safely all of a sudden and concerns of hurting himself, blackouts, chest pain, stroke symptoms, things that constitute a major change in his behavior, gait, etc. Please don't start into things that happened 3 weeks ago that have no real impact on today's emergency. As Jack Webb always said, "Just the facts, ma'am." 5. Important documents and info for those documents include: a. An ID sheet: name, address, phone #, date of birth, at least two emergency contacts with home and cell #s, physicians' names and phone #'s (you won't have their cell #'s, of course, but it's helpful to have phone #'s listed anyway, allergies/sensitivities of meds and foods, list of diagnoses, recent surgeries/hospitalizations/ER visits, med list including name of med, # of mg/mcg/iu, how often and when taken, pharmacy name and phone number, spouse's name (add "deceased" if true). These are the main, immediate items that helped us out so much in the ERs I worked in. 6. You'll be asked the following either in the ER or once the patient is situated in his hospital bed: "Social history": Lives alone/lives with wife/lives with relative (name/phone #), spouse alive & well/deceased, career/job (was a carpenter before retiring), number of children. "Family history": Mother & father lived to age whatever and died from whatever. How many brothers and sisters, approximate age of their deaths and from what. Children/grandchildren with diseases: early-found heart disease, cancers, etc. 7. Other documents: A copy of the patient's "Do Not Resuscitate" order (DNR), a copy of his living will, a copy of power-of-attorney and health-care power-of-attorney.
Having said all this, you may never need to use any of these suggestions but I think having completed this work before any further episode happens will make your life and those of others who take care of your relative so much easier and reassuring. You can email others with any changes in meds or anything else but at the age most of our parents and spouses are now, you won't have to make many changes. I'm new here, am finding your comments and suggestions so very helpful (esp. the ones of you who are venting like I often feel the need to do!), and am taking much of your statements to heart. Hope this helps someone! Warm hugs to you all!
KMCARES what great info from someone on 'the floor' so to speak - this is what I wished that I could have had when I started 4 years ago & why I instigated this thread - lets try to keep it at an active status because so many of you gave great 'in the trench' & 'been there ...done that' feedback that I so wished I had when I started this road & lets pass it forward to all those who are struggling with this as a new part of their life
For those who don't know I am POA [both] for my 91 year old mother & 'legs' for my father [94] who still does his own affairs but I will become his POA when he can no longer do so on his own - as I approach 70 this keeps me busy but many of you are in much heavier demands than I have & I can't say how much I admire what some of you are doing & at many times to the detriment of your own life/health/etc .... kudos on you
This site is so great as it both teaches us but also allows the venting we all need to do - congratulations to all
After 2 years of struggling through the unknown of care giving for my mother, I finally gave in to many people's advice to find a caregiver support group online. I avoided it at all costs for so long, because I have been in denial, didn't want to dwell on the negative, whatever, etc. Not sure why exactly. But I reached a point of total despair and desperation, feeling so alone, feeling like I am making all the wrong decisions, not knowing what to do next, and finally stumbled onto this message board. And what a revelation it has been! I haven't been able to stop reading these messages for two days straight. It is like I have been in the desert dying of thirst and can't get enough. LOL. I am not usually a dramatic person, but seriously, I don't know how else to describe it. Thank you all for your wonderful advice and insights. I hope I am able to pay some of it forward as I go. It is nice to know I am not alone, that I am not doing it all wrong, and that there is a place to go for encouragement, a much needed laugh, and helpful tips along the way. Kim.
(see what I did there?)
My tip for today:
Fibbing and Oscar caliber acting.
My Dad has dementia. He's stuck around 1970. Everything is fine. Just got that couch the other day. (1969). They have money but dad is still on a 1960 budget when he made about $4 per hour. So I have learned to construct little one act plays to get basic stuff done. Dad will always bite if he smells a great deal.
HEY DAD, THIS OLD FRIEND OF MINE DOES CARPET CLEANING. HE WANTS TO STOP BY AND USE UP THE REST OF HIS TANK FROM ANOTHER JOB. HE'LL BE HERE AT 2. NO CHARGE?
Worked like a charm. I had clued the guy in and he played along perfectly. Even fooled mom and she's still pretty sharp.
Notice that I don't ask him for permission, just set it up and present it as FREE STUFF. A similar bit of theater got him to a podiatrist, a new recliner (Buy one get one free deal. This was actually true. I put the free one in the spare room for me when I visit so I can have an adult beverage without getting the evil eye)
I hear folks say, OH I HATE TO LIE TO MOM........Gotta get over that if you're dealing with dementia.
Take notes, when you go to the doctor you can go over some of the things you noticed or even if you feel it's okay or normal -- the doctor may notice something and adjust the medications or look at the situation differently and help. This is especially necessary when someone has dementia, incontinent, and very high level of pain threshold. So yeah, pay attention to the face, my mom will very rarely complain of pain, but when I see her PAIN face, I let the doctor know and he even says that as peple age they may not react to pain so this is VERY important. Ask if they need to be changed, my mom will watch her TV shows and will wait and so forgets that she needs changing. Every couple of hours is good or every time you've been to the restroom for yourself and she hasn't been changed. Good time to ask. Sometimes she gets mad, but when I have her freshened up, I'll ask doesn't that feel better? She'll smile and say yes.
People just naturally want to "win" interactions, but that doesn't work out too well when dealing with dementia. After disagreeing a few times, come to your senses and say, "Now that I think about it, you ARE right. There were three children yelling in the kitchen. I gave them cookies and they left."
Our elders have so few victories.
Years ago I was given a catalogue from a supplier and I was amazed. I doubt anyone prints catalogues any more but spending time trolling through some web sites can be worth your time.
I made that mistake with My Por Mother, and I never repeated My mistake again. There's so much I did not know since I began Caring as a Novice Who hadn't a clue, but like so many of You Carers, We became Carers out of Love.
1. Therapeutic lying
2. Learn to take care of yourself in this Journey
3. Repeat to yourself-"it is the Disease" when things happen
4. Make list of things you would like help with no matter how small & when people ask you how can they help-hand them the list and ask them to pick something on the list.
5. Join a support group-if possible in your area
6. Do not use logic with your person (even though we want to)
7. Understand that you will at times get frustrated and upset
8. No the difference between guilt and regret: Guilt=is when we do something intentionally that may cause some kind of harm. Regret=Is when we wish we would of done something differently or handle something differently.
9. Work on positive thoughts and not negative thoughts (Example: This Caregiving is hard I just do not feel successful-negative thought; Positive Thought=This Caregiving is hard and I am doing the best I can to take care of my loved one)
10. The Care Receiver may react to your facial expression or the tone of your voice as appose to what you are saying-Smile (when you do not feel like it) pleasant voice(even when you feel like it).
11. Be creative and find and learn different ways of doing things.
A list of some of my experiences.
I would add two things to all the comments above (and these may have already been stated; kudos to those who may have already posted:
1. A routine. I found that a daily routine that could be followed as much as possible helped my dad who had Pick's disease and my mom who has dementia deal better with getting through the day. I don't know how he knew it but if I missed his usual afternoon ice cream at 3 p.m., he'd call me on it at 3:02 p.m.! He couldn't tell time either analog (?right word) or digitally but he knew when he was supposed to have ice cream!
2. Argumentative? Redirection. I was my daddy's little girl and it was hard but I learned that it was useless to argue with him about what he was supposed to do or when. I kept a couple of old family albums nearby and would pull one out and ask him about a couple of pictures. We'd talk a bit and then I could get him to take his meds or whatever needed to be done. They quickly forget everything that happened seconds before.
3. Comments about important papers. I worked in hospitals and doctors' offices for 30+ years. One thing I learned and have shared with many friends that a: have a copy of all important documents in a clear plastic bag attached to the refrigerator or somewhere where the patient can't get it but emergency personnel can. b. Every family member who has contact with your relative should have copies of the same material you give the EMTs. c. Every doctor and hospital that your relative visits should also have the same material. It is impossible for you to remember every drug, every diagnosis, and every allergy that your loved one has when you're in a crisis mode. Those patients with long-term problems, such as heart problems, lung problems, etc., will probably visit both hospital ERs and doctors' offices several times before they pass so be prepared. Everyone will love you for it.
4. Be prepared to describe recent (current) problems, the reason you called an ambulance, the reason for a routine office visit: Routine office visit: No changes since last visit? If so, be prepared to relay what kinds of changes (decrease in memory more pronounced, not recognizing you or other family members that he knew before the last office visit. Emergency calls: Be prepared to tell the EMTs/doc about the problem(s) that made you call the ambulance today that couldn't wait until being seen tomorrow: Increased dizziness with a fall/broken bone/unable to control patient safely all of a sudden and concerns of hurting himself, blackouts, chest pain, stroke symptoms, things that constitute a major change in his behavior, gait, etc. Please don't start into things that happened 3 weeks ago that have no real impact on today's emergency. As Jack Webb always said, "Just the facts, ma'am."
5. Important documents and info for those documents include: a. An ID sheet: name, address, phone #, date of birth, at least two emergency contacts with home and cell #s, physicians' names and phone #'s (you won't have their cell #'s, of course, but it's helpful to have phone #'s listed anyway, allergies/sensitivities of meds and foods, list of diagnoses, recent surgeries/hospitalizations/ER visits, med list including name of med, # of mg/mcg/iu, how often and when taken, pharmacy name and phone number, spouse's name (add "deceased" if true). These are the main, immediate items that helped us out so much in the ERs I worked in.
6. You'll be asked the following either in the ER or once the patient is situated in his hospital bed: "Social history": Lives alone/lives with wife/lives with relative (name/phone #), spouse alive & well/deceased, career/job (was a carpenter before retiring), number of children. "Family history": Mother & father lived to age whatever and died from whatever. How many brothers and sisters, approximate age of their deaths and from what. Children/grandchildren with diseases: early-found heart disease, cancers, etc.
7. Other documents: A copy of the patient's "Do Not Resuscitate" order (DNR), a copy of his living will, a copy of power-of-attorney and health-care power-of-attorney.
Having said all this, you may never need to use any of these suggestions but I think having completed this work before any further episode happens will make your life and those of others who take care of your relative so much easier and reassuring. You can email others with any changes in meds or anything else but at the age most of our parents and spouses are now, you won't have to make many changes. I'm new here, am finding your comments and suggestions so very helpful (esp. the ones of you who are venting like I often feel the need to do!), and am taking much of your statements to heart. Hope this helps someone! Warm hugs to you all!
For those who don't know I am POA [both] for my 91 year old mother & 'legs' for my father [94] who still does his own affairs but I will become his POA when he can no longer do so on his own - as I approach 70 this keeps me busy but many of you are in much heavier demands than I have & I can't say how much I admire what some of you are doing & at many times to the detriment of your own life/health/etc .... kudos on you
This site is so great as it both teaches us but also allows the venting we all need to do - congratulations to all