Alzheimer's Support Groups

I just don't want to fall into the martyr mindset.

Mystic ~ downtime is important for your own mental health....You need time to decompress; recharge your battery etc...Whether it's for an hour or two of just going and sitting in a local park and watching the birds and the squirrels; going on a shopping spree for yourself; a mani/pedi; sitting alone in church, whatever.....you need that time and should add it to your list of things to do ~ arranging for a period of time at least once or twice a week for a few hours minimum that is just for "YOU"...{{{{HUGS}}}} ♥

I'm an only child & my mom is an only child so we are the only ones in the family except for my "children" (2 cats & a dog). I tell mom "you're with me & I'm with you, & we're stuck like glue". Makes her laugh & reassures her. The only advantage is that only children are good at entertaining themselves. I can leave mom for an hour or two during the day to go shopping, pick up meds etc as long as I leave her a note & a specific time I'll be back. When I'm home I'm with her all day/night & if I walk the dog or go to my back wing I make sure the baby monitor is on & I have the portable unit in my pocket so I can hear her if she calls. My friends come here to see me & sometimes we eat together with mom. She likes my friends but doesn't have any close ones of her own; just acquaintences. "Down time" for me totals about 6 hours a day, but I'm available if she calls. I am so afraid of her falling (5 times so far this year) that I seem to be on a heightened sense of "alert" at all times & I find it hard to relax, but my new rescue Cocker helps.

Mystic, I care for DH and Mom and I do have a little, emphasis on little, down time. I can no longer leave DH alone. I used to leave him for a short time with notes to remind him where I was...Now I have a caregiver who stays with him while I work two days a week. I can leave him with Mom for long enough to go to church or grocery, but that is probably a bad idea! Like Doug, I now get up early and usually have some time then. DH is still sleeping today, but got up at 9:00 am yesterday. I occasionally have a lunch out with friends...a few times a year! Also, like Doug's DW, DH is really easy to care for...most of the time.I finally got some help with Mom. About 3 summers ago, a really good friend stayed with them so I could have 5 days to visit my son and dil in Alaska, and it went pretty well, but I don't think I could do it again as DH keeps saying he can't go to bed without me...But I find that DH does really well with the caregiver while I am at work. I try be always be at home evenings. I don't know if this is an answer or not. I think you really need to let someone help you and NOT feel like a martyr...I think DH knows when I am gone, but forgets once I get home....and we sneaked into this little by little. I had someone help me out with house work two days a month and he got to know her as the cleaning girl, so when I needed her to be here all the time I was gone, he never thought of her a looking after him, so it was OK. But as wwmb says, you really NEED some time for yourself. Everyone will be better for it, including DH!

Oh, you guys, I am almost in tears. Everyone needs down time and quiet time and time of their own. I think that our society needs to take aging problems much more seriously than 'we' do. Until then we have to get our own helpers. I thank God every day that my daughter is living with us now. I have to be sure to give her down time and am so grateful that she is diligent about shopping and cleaning. We just recently hired a lady to come in to do deep cleaning once a month so that we can lighten her load. It looks like now that we three will be together for many years and we have to sharpen our 'methods' of survival every once in a while. I say try try try to find a few people that will give you time off on a regular basis so that you can prepare and plan for what you want to do. Maybe your loved one still likes to go for a ride...then you could have time at home to quietly do what you want to do. Please do not give up trying to find a way to peace for yourself. Tyler

wrapping my wing around you in support and love! hugs! ♥

Thank god the day is nearly over.

Had a mini breakdown this morning which left me mentally, emotionally and physically drained. My mother was crying in sympathy which only mad eme feel worse. We hugged each other.

Then when I managed to pull myself together, the Public Health Nurse came. Good.

Had a lovely binding exercise with my mother when we tidied up her hell hole of a room together. This formerly houseproud woman enjoyed her experience. Maybe we can continue this for the other rooms until we have a tidy house yet again.

I had to attend a meeting this evening. It was horrible.

Now back home.

Thanks for your support.

Mystic on Wednesdays I take mom to the Adult day care from 10 to 4 but that is about it. I about had a nervous breakdown a month ago and had talks with my sister and brothers. They swore they were going to help and my sister has come once and stayed 3 hrs with mom and is coming Friday of this week because my DIL and son are having a new baby. They just do not get it. My brother called this morning and wanted to know if we were ok and to pray for his children because they were having problems. Any excuse is what I say.

Mystic, I am quite fortunate in that we have government funded respite care in 3 hour blocks during the week plus I have very supportive siblings who add in a few hours so I have 6 or 7 hours a couple of times a week. I also have my siblings stay with mom a couple of evenings a month while I have book club or Bible study.

Sorry, i meant to add in something else: even with that I find I need longer breaks because this caregiving is so stressful. Everyone needs downtime. Sending you a huge hug and wishing for a miracle for you that you'll get the time you need.

Not much down time here. Our duaghters come down maybe 2 days a week & stay for 4 hrs while I go out to work. I leave my wife in bed in early morning once or twice a week & run to my office for about 1 hour. I too, like Doug get up early & go on computer & do paperwork before our day begins, Sometimes , my wife's sister comes for visit for luch & chats. That is really great for my wife. Unfortunately, her 3 brothers' have forgotten about her. My family members could offer more too for that matter! I am trying to get more of our group of friends involved in our lives, but either they are too far away or simply email me to say they will be in touch but never do. I'm stopping now because I am starting to become negative. And I want to stay all about the positive!!

F/Man - staying positive is very important, but you do need to acknowledge the negative - just don't let it too far in, as it likes to take control. Acknowledge it, put it in it's place and go on. Hugs to you and your DW (dear wife)! ♥

Family man, My mom's brother hasn't been in touch with her for years, neither have her nephews. I can only think that it is because they don't understand the disease process and what it is doing to mom and they don't know how to act or what to say. People who are uncomfortable with it all, will find reason to stay away or just stop being in touch all together. I use to be really angry about it but now I just don't care. They are the ones who will have to deal with the guilt and remorse, not me. And I plan on purposely excluding them from any services after mom passes. If you couldn't find the time for her while she was here, I don't want you to all of a sudden have time for her when she is gone. I guess I am still angry..lol

OH {{{{{{{{HUGS TO YOU & DW}}}}}}}}} ♥

Hi Mystic! This is a great question, and one that's commonly heard. Caring.com has a few resources that may be helpful to you as you seek respite:

1. This article is entitled "How to arrange breaks from caregiving" and gives several avenues of reaching out, perhaps even a few you haven't thought of: http://www.caring.com/articles/respite-care
2. In the United States, we have Area Agencies on Aging which provide general information and offer referrals to local eldercare services, including those that may help arrange caregiving breaks: http://www.caring.com/local/area-agency-on-aging Perhaps you can find similar resources in Ireland (contact your local government representatives).
3. The Respite Care for Alzheimer's Caregivers Resource Center has articles and tips that may also be helpful: http://www.caring.com/alzheimers-caregiver-respite
4. You may also consider finding an in-home caregiver or home health agency to give you breaks once in a while. For U.S. based caregivers, you may search in our Senior Living Directory: http://www.caring.com/local/in-home-care (for in-home care) and http://www.caring.com/local/home-health-agencies (for home health agencies)

I hope a few of these resources are helpful! Please don't hesitate to contact our team if we may help you find additional resources.

Kind regards, -Sho from the Caring.com Community Team

Jim, just an add in. Had my taxes done today and found out I could only deduct $27.00 of the $119.00 per day charge at the memory care/assisted living unit. I was, however, able to deduct all of the money I spent on home health care. Go figure.

Charlene, great to hear from you. So much paperwork and I don't understand half of it. But I am muddling through. It would be great if we all lived in close proximity to each other. My husband's 64 year old nephew passed away on Sunday after finding out that he had liver cancer. Dr. gave him 2 mo. he lived 2 days. I've had enough sorrow to last a life time. I hope everyone else is doing well. Lela

Lela, that is so sad. I am very sorry for the loss of your husband's nephew. My prayers are with you

I'm so sorry Lela. My heart break for you and your nephews family. Hugs to you, Michelle

Lela, I am sorry you also are continuing to have deaths in your family. The nephew is so much better off because he did not have to suffer in the latter days of cancer. Liver cancer is not pleasant at all. Hugs my friend.

I have to finish shampooing my carpet and get to bed. Been trying for 2 days and decided it would be done before I went to bed. Still like 24 ft in the hall and about 12x12 dining area also around my compuiter. So this is good night i think.

Jim, I feel so badly for you and Lynn. You truly are between a rock and a hard place. You may get lucky and find a place that would be able to hold Lynn in the palm of their hand or you may be faced with the difficult choice of placing her somewhere inappropriate and/or unacceptable and being able to live with that, or bringing her home and dealing with the mindbending and unending tasks of caregiving. Only you know your limits and your abilitiy to be tested time after time. You are an oldtimer on this site. And the lot of us feel connected to each other as we struggle with these choices and their aftermath.

Hi Belltoll, Thanks for posting your caregiving challenges with us. You may consider hiring a Geriatric Care Manager to assess your mom's current needs. Geriatric care managers also identify and coordinate resources for seniors. Geriatric care managers, or GCMs, can take over nearly all aspects of eldercare in some cases. Some local government agencies and charities offer geriatric care consulting services free or on a sliding scale. If hired privately, expect to pay a GCM $75 to $250 an hour. Geriatric care managers are best for crisis or needs assessment, complicated ongoing care, and supporting long-distance caregivers. You may search for a GCM in your area through our Senior Care Directory: http://www.caring.com/local/geriatric-care-managers

Furthermore, if you're considering searching for another facility, you can look for care providers in your are (memory care, assisted living, nursing homes, retirement communities, etc) and read ratings and reviews from people who have had first-hand experience with providers, in our Senior Living Directory as well: www.caring.com/local

Furthermore, if you feel inclined to rate and review facilities you've seen or had experience with, you may do so here: http://www.caring.com/review_submissions/new?utm_source=community

Please don't hesitate to contact our team using the blue "Feedback" tab if you need help finding additional resources.

Kindly, Sho of the Caring.com Community Team

ShoB Oh, how I wish it was my mother. It's my wife, who is barely a senior--just turned 65. I am hooked up with my local Alzheimer's Assoc. and have access to no fee placement agencies to help cut through the clutter. But thanks for the info. Jim

You can try but from experience it wont matter bc she wont remember by the time you see her again I know from experience its very hard but somehow you will get thru it Just breath deep smile and hope for the best

that is normal. it is kind of a stage of sorts. when mil would be negative nancy I'd tell her to tell me something positive. then I would procede to tell her all kinds of good things!

Little, I doubt it would do much good. My Mom became very self centered and nothing mattered to her except her. Your best bet is to just keep a stiff upper lip and as soon as you get home, jump on your computer and vent here. All of us are able to understand where you're coming from because we've all been there too. Sending you a warm hug and a soft shoulder. Tizzy

Thanks for the input everyone. My mom is only 79. She is mostly negative about my dad who is her caretaker. Jazmine how did you overcome the anxiety and depression you felt while your parent went through this????????????

You do it by watching your own attitude and putting up spiritual, psychological barriers to letting her negativity get to you. You have a choice in this life to be controlled by other people's thots, words, desires, demands, or being yourself and making your own decisions. The thing that literally turned my life around 40 years ago was becoming a Christian and worshiping our joy-filled, peace-giving, loving God/Jesus/Spirit. Take control of your emotions and do not let fear, anger, hurt control you. You CAN DO IT because millions of other people have done it. Sending you love and my prayers. Grandma Piver

Piver's wisdom - gotta love it! ♥~

You are so true Piver, such a wise Lady.

Piver, you are a wise counsel. Sending you a great big hug and lots of love. You are such a positive person. :-) Tizzy

yes you are Piver!!! Hugs!!! :)

Piver, Have I told you today how much I Love You ♥ {{{{HUGE HUG}}}} ♥

PIver, that very true and good advise. Little, like what Piver said, don't let the negative take over you. You got to understand the the sickness that make your mom say all those things. My dad also the same. If he is good boy he is super nice and caring, if not he will be super nasty. He'll scold me and chase me or my husband out of the house. He'll throw anything he get hold on. He said I am shameless daughter married still stay in his house and eat there. (Dad is staying in my husband's hosue). How? He event go tell all my neighbour that .... : ( We have to understand is his sickness and we cannot take it serously what ever he say. Like wise you mom.

Piver, You are awesome! Your words of wisdom help all of us remember to stay calm in the midst of this storm we endure every day. God has blessed us by blessing you! THANK YOU, for being HIS voice.

Little, there's a book that many have recommended titled, "Learning to Speak Alzheimer's". I have not personally read it, but many here have and it comes highly recommended. One of the others will have to give you the name of the author.

By J. K. Coste. My bible to get thru this for years.

I was personally blessed for 30 + years after giving my life to Christ by attending a Christian retreat or 5 day camp at least once a month where all the sharing (not preaching, not teaching, just sharing what God has done in lives) was from people who think, believe only positively. If you read Christ's and Paul's teachings carefully you will discover the Bible to be the best manual for living ever conceived! Example: "Fear Not" is repeated in some form from Genesis to Revelations dozens of times (people count these things). Christ teaches a loving, peace-giving, being-the-light- of-the-world lesson. We are given negative emotions as tools which we need to learn to use only positively. There is a time for tears, anger, action but only as a tool to do God's will. Think positively about them.

The difficult thing is to get out of your head and into your heart - to not only reason things out but listen with your heart to hear Holy Spirit talking to you as He does continuously, only we need to learn how to listen. We are taught to pray continuously - I Thessalonians 5: 17 - which means be in communication with God at all times - at least He is always present. Not easy to do as we are human. The next verse is more important as it teaches us to give thanks for all things - so if mom is making you nervous with her negativity, thank God for it and look for the good that comes out of it. An amazingly powerful concept. Try it!

'Love you all! Grandma Piver

you did it again, Piver! I also keep a running dialogue most days - thanks for the reminder! ♥ off to the barn - busy day today - "I may forget thee, but do not thee forget me!"

nah.....I won't forget you!! ♥♥♥

little, there is really no use in saying anything, i just try to refocus moms attention to something else happy, read, play with cards, music, if she can walk, take a walk or ride in chair.Mom is very negative too, but put yourself in there shoes WHAT do they have to look forward to?It is not easy as gatfly said and it gets us all down at times but we have to try and be very cheerful for them and it rubs off somestimes, keep smiling even if you don't feel like it. This has really been the hardest thing for me to watch my best freind(MOM) just drift away into another world which i am not invited.... love and prayers

Thank you so much Piver....HUGS.......

Thank you everyone. It is so nice to have a place to go and talk. I'm 52, recouping from 2nd knee surgery in 5 months and now have been told I'm starting menopause. Sure did not need anything ontop of my parents health issues but thats life here. I know I need to be around positive people so thank you -

Thank you everyone. I'm 52 and just recouping from 2nd knee surgery in 5 months, and was just told I'm starting menopause (losing my mind) sure did not need anything more with my parents health issues. I know I need to be around positive people so it helps to beable to talk with those in the know. Thank you

Thank you everyone - it is wonderful to have some positive feedback.

Hello again little. Ouch, that's rough! Second knee surgery is no walk in the park. At least now you know where some of the anxiety is coming from...menopause! Been there and done that. I had a hysterectomy at age 33 and was thrown into a surgically induced menopause before I was even discharged from the hospital. Everyone is different and you may breeze right through it. Think positive!! You will love being able to come here. It's a very energizing place. I'm so glad you found us. Tizzy

Little, I had both knees replaced 4 months apart about 8yrs.ago. It was no picnic and can hurt when I fall because it hurt so much to get I my knees. So the motto is " don't fall". Good luck with your knees and prayers with the menopause and the care of your parents. Hugs.

little, I'm convinced that it problems came equally spaced throughout our lives, we'd never fully recover from one before the next one hit. When they're bunched up like this, they teach us to set priorities. And we get a breather before the next batch pounces. Just like a muscle, our spirits grow stronger if they can rest between periods of exercise. ♥♥Lynne

Maxi - so good to have you back (taxes be damned!) - I really needed to read this right now - thanks!!!! ♥~

Little...I have rheumatoid arthritis (developed it at 14 and i am now 48) had both knees replaced( 1 done then the other 2 months later..and its time to have them redone), a wrist fusion, knuckle replacements, a hysterectomy in my late 20s or maybe 30 (cancer cells and severe endometriosis....its all a blur) and have gone through (still going through) menopause...plus my mom has dementia and so many other chronic illnesses.

you can do it....you can do it!! :)

I have absolutely NOTHING to complain about!!! Wow! and yet you have a gorgeous smile on your face!!! ♥

:)

Hi 'Little,' Welcome! Here are a few articles on Caring.com that may help you during this difficult stage:

1. Is it okay to correct a dementia patient for being mean to their caregivers?: http://www.caring.com/questions/is-it-ok-to-correct-a-dementia-patient-for-being-mean-to
2. Do all Alzheimer's patients have a negative attitude?: http://www.caring.com/questions/the-problem-i-am-facing-now-is-my-moms-attitude-she-always

You also mentioned being stressed out. The Caregiver Stress Solution Center may have some resources that are helpful to you: http://www.caring.com/caregiver-stress

I hope these resources are helpful! Please don't hesitate to contact our team if we may help you and your loved one find additional resources.

Kind regards, Sho from the Caring.com Community Team

Sho B - are there any articles on how to talk to an Alzheimer Mom? My dad is the caregiver and I'm trying to give him a day off once a week but I am having trouble with anxiety while with her and learning how to stay positive - and make her happy

Hi 'little',

The two articles I mentioned above include expert answers for Alzheimer's and Dementia caregivers (like you) who asked similar questions about taking care of mom or a loved one: "Do all Alzheimer's patients have a negative attitude?" and "Is it okay to correct a dementia patient for being mean to their caregivers?"

Jytte Lokvig, PhD, one of the experts noted above, states, "When we caregivers set a positive tone, we’ll get a positive reaction; maybe not right away, but when we stick to it, things will improve."

Joanne Koenig Coste, the author of the popular book, "Learning to Speak Alzheimer's", writes, "A rule of thumb would be: help the caregiver [you] non-verbally express emotion using facial expression and gestures. The appropriate response, even if it may seem counter-intuitive, to stop the mean-spirited comments will most likely be found whether it be laughter, sadness, or feigned tears! Dementia folk do not generally react well to any mode of correction or chastisement no matter how lightly it is offered."

You can see both of these comments and more in the articles I provided above. Hope this helps! Don't hesitate to contact me again if I can help you find additional resources. I'm happy to help!

PS I forgot one (oh lordy is it catching?)

1. We are going home tomorrow. The car is all booked. So until then shall we......

Kate - number 2 on the list would never work. DH and I actually cannot even bring her to visit our house as we are 4 doors down from hers. our #2 is , but all your furniture is here where you live in your apartment and your clothes, there is nothing in your house for you. Never tried home on the range. there is a lady there who would probably sing harmony. I actuallly just stick with, and I will quote b/c I use it verbatim every time. "Mom, you live here now, your bed, chair, dresser and clothes are here. I can't take you back to your house, you are not safe there, you cannot stay alone there, I cannot take care of you as I did before and you cannot take care of yourself either. you want to, but cannot and I am sorry for that. Here is where you are safe, you are loved, you have friends and your family knows you are cared for around the clock, safe and we can come in anytime we want to to visit." I never say that the AL is home. and I never bring up home either. (longwinded, but repetition, if it works for her, it might one day work for me)

Mom still lives in her home of 60 years. At this stage she now questions where she is especially if she's sundowning. I have put up dozens of big framed photos of family, our house, & past pets. When she starts getting disoriented I bring a couple over to her chair & we reminisce about the old days. It seems to calm her. That's what works for us.

Half the time Mom doesn't know where she is. She says "Richard will be home after work" (Richard is my Dad and he ded in 1999). I just agree with her and keep on talking to her. Tried one time to tell her he was dead, but she didn't remember the next day, but she's content so that's all I can ask for.

I got so sick of hearing this, every evasion I tried seemed to only work for a wee while then it started up again, in desperation I said "off you go then" not a risk as I had the car keys and hubby can not walk very well, so he went over to his chair and pulled his cuddle rug over him and went to sleep. I think it might be a reasurance thing, mmmmmm

I wonder if all the evasion things we have up our sleeve only make matters worse for them. What do you all think?

Hello 'Sonny13', Thanks for sharing your challenges with us! Here are a few resources that may help you with the "I want to go home" phase you are speaking of:

1. 8 Ways to Soothe Someone With Dementia Who Says, "I Want to Go Home": http://www.caring.com/articles/8-ways-to-soothe-someone-with-dementia-who-says-i-want-to-go-home
2. Joanne Koenig Coste is the author of a book called "Learing to Speak Alzheimer's" and she talks about this phenonmena in the following interview with Caring.com: http://www.caring.com/interviews/interview-with-joanne-koeing-coste-about-alzheimer-s

I hope some of these resources are helpful! Please don't hestiate to contact our team using the blue "Feedback" tab if you need help finding additional resources for you and your loved one.

Kind regards, Sho from the Caring.com Community Team