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Alzheimer's Support Groups

Get practical tips and support from other caregivers in online Stage Groups.

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Alzheimer's Support: Featured Caregiver Conversations

Participate in Stage Group conversations like these when you join Steps & Stages...

Nursing Home Care: How to Respond to "I Want to Go Home"?

jds said...
Dad has been in the NH almost a month now. He is asking more and more about going home. My sister took him to church last weekend and stopped by her house to pick something up. He lived one lot away from her and started to get out to walk to his house. She took him there. He wanted to see if his mower was in the garage and look around inside. I don't know if this was the best thing to do, but he went back to the nursing home and did not create any fuss. He just wants to know why he can't be at home. We (5 kids) are planning to sit down and tell him we all want him to stay at the NH. Other family members are determined to be totally honest with him and not tell him any fiblets. Comments?? Suggestions??
from the Moderate Stage Support Group
CaringDenise said...
Hi jds, Thanks for asking about this common question that dementia caregivers receive from their loved one! And thanks to all who offered suggestions. Here is some information from Caring.com that may also be helpful: [8 Ways to Soothe Someone With Dementia Who Says, "I Want to Go Home"](https://www.caring.com/articles/8-ways-to-soothe-someone-with-dementia-who-says-i-want-to-go-home) Also, if you haven't already submitting a review of your dad's nursing home, Caring.com is currently hosting a reviews contest, an iPad Giveaway: [https://www.caring.com/review\_submissions/ipad?utm\_source=community\_ipadgiveaway\_take2](https://www.caring.com/review_submissions/ipad?utm_source=community_ipadgiveaway_take2) Deadline to enter is August 31. Beyond that, you can post reviews in the nursing home directory here: [https://www.caring.com/local/nursing-homes](https://www.caring.com/senior-living/nursing-homes) By posting your feedback about the provider you're using, you can help other families in their search for care, which can be a difficult process. Thank you!
Tizzy said...
I think those are all normal feelings ids. I'm glad things are getting better for you. Just remember, your Dad is in a safe place, he's doing well there and you like the staff. It will get better!! I promise!! Sending you hugs and lots of love. Tizzy
ComaMom said...
I used to tell my Mom the truth, well that was after I turned 30-years-old anyway. Now I tell her what will make her the happiest or will be the easiest. I lie to my Mom. It breaks my heart, but if it helps her than so be it. We were fortunate to have an excellent doctor who explained to her what was happening and I stuck to that for a long time. Godspeed.
Gatfly said...
Come on here, if you feel like melting down - we have great melt-down parties!! ♥
daylily said...
Prayers for both of you, Deel and JDS. Crying is a great way to get those feelings out and then you can feel better to tackle the days ahead.
deel said...
Hugs and aloha to you jds! Yes, try being upbeat! It helps, but if a meltdown is needed, please...we deserve to have meltdowns too! i feel fragile lately that a meltdown seems lurking close by! Hoping I can beat it...keep me in your thoughts...thanks.
jds said...

Thanks for all your wonderful comments and suggestions. I am doing better than I was in the beginning. I struggled and cried for 3 days straight. My fear was I would cry in front of Dad and I did. I made the mistake of saying I needed to go home and Dad asked why he couldn't go home. I listed all of us kids and told him we wanted him to stay there as it was safer for him. I started crying and he said, "Why are you crying?" I replied, I don't know". Then he said I don't know why you are crying either." I certainly won't make that mistake again! I currently have more good days than bad. We are very pleased with the nursing home and its caring staff. That makes things much easier. This has been an emotional time on many different levels. I have attended 5 funerals in the last month. The good thing is I have experienced some very joyful times lately too. I am blessed to have a good support system and feel I am making progress with this huge change in our lives. I appreciate your thoughts and concern. It means a great deal. Hugs! Hugs! Hugs!

maryjangel said...
sometimes a fiblet is the most compassionate thing. our fiblet is absolutely true, her doctor believes her to be safer at an AL than in her home alone with us checking in several times a day. and deferring to the doctor's opinion/orders makes it just a bit easier to say when she says when can I go home. "When your doctor says you can." Gives a bit of hope and the annoyance with him, who she respects highly, is marginal as to the annoyance with us b/c she wants her way.
Piver said...
Exactly.
Gatfly said...
While I never lived in this house, myself, it was still "the folks' place"....
Piver said...
Selling my folks house was painful for me, too, Gat. Closing a door on part of our lives, never to be opened again.
Gatfly said...
When the folks' stuff was still at their place (all cleaned out now and the signing on the sale is Friday!) he often wanted to go out there and just walk around in HIS garage and look at HIS things - even though he can't see very well. I have a feeling that I will get tears in my eyes when I sign those papers on Friday.....and I rarely cry. ♥ I believe in telling the truth if it isn't hurtful or harmful. If it only causes pain, then "no". Follow your heart on this one.....♥
Piver said...
jds, I'm sure Dad got a lot of comfort from realizing the house was still there with his mower & all was well. 'Seems that was a good thing. Tizzy has good suggestions - all with no fiblets. Others have suggested you kids getting to know the staff, call them by name every time, visit with the other residents with Dad, get involved in any activities with him, take him out for lunch, sponsor an ice cream social with the residents. In other words, you kids make a practice of being very much into his new life right there. Make sure he has friends. Have Dad take you for a tour, have him introduce you to his new friends. Make no bones about this being his new life & all of you thinking it is great. Never commiserate with him, but keep up-beat, smiling, enthusiastic with him. How are YOU doing with his being there? Sending you hugs. Piver
Tizzy said...
Well jds, when my Mom started in with that, I would just tell her it was doctor's orders that she be in the facility for her safety. Then I would point out how wonderful her room was, she had everything she needed right there and wasn't it great she didn't have to cook, clean, shop for groceries? She had bowling right there in the home (wii bowling) and bingo. She even got her hair done right there at the facility once a week. That left more time for us to go out for lunch and do fun things together. It usually worked and she'd be very satisfied with living in the assisted living/memory care facility. It really was a wonderful place and I was so happy with Mom's care. Tizzy
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In-Home Care: How to Keep Mom Active During the Day?

upnorthgma said...
Hello, I am the primary caregiver to my mother. She is 92 years young and I relate her behavior to approximately a 2-year old. She was diagnosed with Dementia 6-7 years ago and now has lived with me for the past 4 1/2 years. Lately, she seems to have her days and nights mixed up. She dozes all day long and I try to keep her active to stay awake, but that is much more difficult than it was last year at this time. She doesn't seem to want to go outside, doesn't show any interest in anything except sitting and dozing. Then when bedtime comes, she is tired but keeps getting up and down through the night. I have a sleep disorder myself so I am on medication to help me sleep, but it's difficult when I have to be up checking on my mother and what she may be into or if she has had an accident and needs to be changed. I would welcome any suggestions for activities or things that would keep her interest. She will color, and put together very simple jigsaw puzzles on occasion, but no longer cares to do word searches (which she used to enjoy).
from the Moderate Stage Support Group
CaringDenise said...
Hi upnorthgma, Thanks for your questions, and thanks to everyone who offered suggestions! If you still need more ideas and information, here are some links to Caring.com resources... - Activities for spending quality time with a loved one with Alzheimer's disease: [https://www.caring.com/articles/alzheimers-activities](https://www.caring.com/articles/alzheimers-activities) and [https://www.caring.com/partners/mild-moderate-alzheimers-activities/plant-an-herb-garden.html](https://www.caring.com/partners/mild-moderate-alzheimers-activities/plant-an-herb-garden.html), or for more advanced/severe stage: [https://www.caring.com/articles/how-to-spend-quality-time-with-someone-who-has-advanced-dementia](https://www.caring.com/articles/how-to-spend-quality-time-with-someone-who-has-advanced-dementia) - Medicare information: [https://www.caring.com/medicare](https://www.caring.com/medicare) You can also visit this site that the government has created for caregivers: [http://www.medicare.gov/campaigns/caregiver/caregiver.html](http://www.medicare.gov/campaigns/caregiver/caregiver.html) - VA Benefits info: [https://www.caring.com/articles/veteran-benefits](https://www.caring.com/articles/veteran-benefits) - Also, when you need professional support, such as in-home care, adult day care, assisted living or a memory care community, Caring.com has an extensive senior living directory with more than 24,000 consumer ratings and reviews of the listed providers: [https://www.caring.com/local](https://www.caring.com/senior-living) I hope these links are helpful to you!
Becca13 said...
Thanks, I'll try the GNC store right down the street from us. ♥
staryskies said...

i got the luyties at the health food store in my town. but they have it on line. homeopathic medicine. that is what i give mom so she can rest and for her nerves and anxiety. it is not habit forming and is safe and it really works great for her. stary

Coping in Canada said...
Thanks Stary. Wow, this site has been a huge help in all kinds of ways.
Becca13 said...
Stary where do you buy your luyties #394? I have searched online and cannot find it. Am going to try the castor oil remedy on my joints too. Thanks for the info. ♥
staryskies said...
corry i take life extension arthomax with uc-11@apriesflex and n-a-g 750 n-acetyl glucosamine salt free supports joints and intestional functions. i also use an old time remedy Castor oil, rub on the joints.
Coping in Canada said...
Stary, thanks for the info on the homeopathic medicine. Have made a note of it. What type do you take for your arthritis?
Coping in Canada said...
I have tried the coconut oil and didn't see any difference with mom. the only problem I had was getting her to take it. It's good stuff though and I think it certainly can't hurt. Everyone is different and what works for one might not for someone else.
Tizzy said...
Yes upnorthgma, we've also heard and discussed the use of coconut oil. I haven't heard if anyone has actually given it to their loved one yet. You know, with this disease, one will try anything if there's even a glimmer of hope for a cure or a reversal of the dementia. I'm so glad you've found this web site. I look forward to getting to know you better. I'm sure you're going to be a great addition here! Tizzy
upnorthgma said...

Thank you Gatfly. We were also told by a Hospice nurse that if the doctor states that help is needed with daily routines, they can stop in and help with that sort of thing. My Mom is so tiny, I am not having issues with her baths yet. But I know she will probably become less balanced and weaker as time goes by.

staryskies said...
hey un. my mom is on aricept. the dr. wanted to up the dose but i said no. it was causing her indigestion problems. she is still taking it the low form only. the other thing i have her on is for her nerves. it is homeopathic meds. it is for anxiety and depression . it is called luyties #394. i works wonderful. i aso take homeopathic meds. i have arthritis.
Gatfly said...
As long as your Dad saw active service, I think there should be something there.....some of it depends on personal resources, too. Good luck!
upnorthgma said...

Thank you Tizzy for all the information and the chuckles on your Mom's "family" of birds. My Mom can pop off with the funniest things sometimes. Also, thank you Gaffly for your support. My dad was in the military and my son is now dating a Registered Nurse at the VA Hospital in Saginaw, Michigan. So that gives me some more resources to check out. The problem is, sometimes the nights are worse than the days. But I am going to check with her doctor about Melatonin. My dh and I are quite familiar with that supplement, but I will ask her doctor what she thinks. I'm concerned about her incontinence, and when she gets up at night it usually is to go to the bathroom. And yet, in the morning she is still saturated. Sometimes it feels as if we just can't win, and unfortunately with this disease we can't. Someone had mentioned Namenda ... my Mom started on Aricept and then Namenda was added, but we saw no improvement at all so they stopped it and she is now on the generic form of Aricept. Our support group was on a coconut oil kick for awhile. There is a book written by a caregiver who gave it to her husband to help his dementia and it worked wonders, but I guess there is a lot of controversary with that also.

Tizzy said...
Hello again upnorthgma. I'm south of you in Grand Rapids, Michigan! Glad to have another Michigander on board. My Mom also loved to watch the birds. When she first moved into independent living, she had a very small balcony on the third floor. She started bringing bread rolls back to her room from the dining room after meals. She'd break the roll into small pieces and throw them out on the balcony. Only sparrows came but she enjoyed them so. Then she asked for birdseed. Okay. I also got her a small bird feeder. My Lord the amount of bird seed she went through!! She began calling these little birds, "Her family". Okay, what am I? Chopped liver? Then the lady that lived below her started to complain about the shucks from the seeds falling onto her balcony. She liked sitting out there on a chair and reading her paper. Mom got very offended. We quit feeding the birds. I was so thankful because it seemed I was hauling up 20lb bags of birdseed up to her room! Let's not even talk about the droppings they left behind. euwww I got off track here. It's great that you have a support group you can attend near you. It helps so much to be able to vent and get it off your chest. Many times, that's all you need is to be heard. That's what we do the best. :-) I'm not sure if medicare contributes anything but check the titles on the top of this page. Click on them and that opens a pull down menu. Also, in case you want to ask the moderators of this room something, just click on that little blue box on the right that says "feedback". I'm so glad you found this web site. The more the merrier!! Your DH (dear husband) is right when he says it's not your Mom, it's the disease. God bless him! Sending you big hugs for you and your family. Tizzy
Gatfly said...
We'll hold you to that! lol ♥ Not sure what all is available through Medicare, but was you Dad (or your Mom) in the military? The VA has been a godsend for us. They supply Dad's meds and also supplement the cost of Assisted Living (AL). I'm sure someone else will pop on with some helpful advice - and there is also the links at the top of this page - just navigate through to see what's there. :) Hugs! ♥
upnorthgma said...
So good hearing from all of you and welcoming me. It so touches my heart and makes me feel so uplifted to listen to everyone's suggestions. I am in northern part of lower Michigan. My mom loves to watch the birds also, and we have put up several feeders right outside the window for her to watch. She also will spend hours and hours folding clothes. You are right in saying people like to have a purpose and my mom was always a giver ... rarely did anything for herself, but now that she finds it is hard to accomplish even the simplest of tasks for herself, it is so very sad. My dh and I attend a monthly Support Group at the Senior Center in our nearest town (Hale, MI). There we find a lot of loving fellowship and laughter which is great, but here I can talk freely about the downs I have and not bring the whole group down. Yesterday, my mom undressed right in the living room in the middle of the day. Good thing dh wasn't home from work yet. I tried taking mom to the senior center for lunch and fellowship with others, but she really hides inside her shell. Funny, because before her symptoms began she attended all the activities and even drove one of her friends to the center downstate because her friend was mostly blind. Like I said, she always did for others. I still will take her to the center if my older sister comes to visit. All three of us go, and Mom seems to be much more social. Power in numbers I guess or else it's because my older sister is there. Don't know, stopped trying to figure out what is going on in my mom's head quite some time ago. When I get frustrated (and I do), my husband is usually there to remind me it's the disease and not my mom. If he isn't here, I walk away for a couple minutes and try to take several small breaths of air to calm myself down. My sister thinks I should get someone to come into my house to relieve me even if only for an hour or two. I will try to check out what is available up here and what it would cost. Does anyone know if Medicare has any provisions for this disease? I am so glad I found this site. Thank you everyone once again for being here for me. I hope I am able to do the same for you.
Gatfly said...
love the birds here, too! At the AL that my folks are at, they have a lighted cage with several types of finches in - very colorful, they even have young ones occasionally. Someone comes and maintains the cages and removes the little ones when they are big enough as it would get too crowded. It is a focal point for the kids when they go to visit Old Papa and Granny. ♥
staryskies said...

another thing my mom loves to watch is the birds. i have several bird feeders in the back yard and she sits in the sunroom and looks out the sliding glass doors at the birds for a long time. we have a lot of different types of birds. coming and going all the time. i spend a lot on bird food but they are so intertaining. one of Gods wonderful masterpieces.and the colors are so beautiful. have a nice day everyone stary

marianna said...
Upnorthgm, **WELCOME** to the conversation. I'm down south in rural South Texas. I can't offer any advice because I don't have that problem with my 93 y.o. mom. She does take some naps during the day, but I try to leave lots of lights on and make alot of noise to keep her mostly awake. She sleeps more soundly than I at night. Looking forward to getting to know you better!!
Tizzy said...
Southerngirl4, the diagnosis isn't really a surprise, is it? Like you said, same road. My Mom was on Namenda for about 5 years. We did try and take her off it and she got much worse. Putting her back on helped a lot. Each person is different on how they handle these AlzD meds. Some can take them and others can't. None of these AlzD drugs are a cure. They say it helps to slow down the progression.....for awhile. What kind of things can your DH still do? Does he like puzzles? I mean the simple ones. 30-50 pieces but certainly not more than 100. Sorting his sock drawer? Sorting nuts and bolts? What kind of work did he do before AlzD reared it's ugly head? It's important to them to feel useful and productive and to feel they have a purpose. At times it's harder to entertain them, I know. I'm sure the others will also have suggestions. Congratulations on getting rain! I thought we were going to get some today but no. The sky spit some rain drops this afternoon but not enough to do any good. Just enough to make the dust on our car a lot more noticeable. Hope you have a good evening as well. Tizzy
LaurSavvy said...
MIL has been on namenda and aricept for about 3 years, and even the Dr says that it is hard to tell if it is working. They are meant to slow the progression of the disease but how do you know where they would have progressed to without it?
southerngirl4 said...
Went back to Dr. and results are alz.,not ftd as thought,,,Same road and in mid moderate stage,,Does anyone have any thoughts on Namenda reallly helping,,have been on it about 4 yrs now,, Storming here and did we need the rain,, everyone have a blessed nite// Dh is in such good shape and is so bored not being able to do things he has always done o lord the things he can mess up ha
germy said...
WELCOME Upnorth. You have found a terrific website, for venting, learning, laughing a tear or two, &,support. As you can already see, someone will pop in with a possible suggestion. I care for my DH (dear hubby) of 55yrs, 24/7. He was diagnosed nearly 6-7 yrs ago.We are from NW Iowa. Good Luck, & hope that you can soon have 'sweet uninterupted dreams'...
Tizzy said...
Hello upnorthgma and welcome! I took care of my Mom who lived in an assisted living/memory care unit. She passed away a year ago. Mom certainly had her days and nights mixed up. She'd be so tired and wanting to go to bed at 4-5 o'clock. She'd take a nap in the afternoon and be in bed by 8:00 p.m. The staff would tell me that she'd get up, poke her head out the door to see if anything was going on. She was obsessed with meals. She often said they didn't get any meals there. It was because she had forgotten she had eaten already. As many as 6 times a night she'd get up, get dressed and try to go to the dining room. Mom wanted no part of the activities the facility offered. Sometimes I'd get middle of the night calls from her just calling to "chat". Does your Mom nap during the day? Sounds like you've tried just about everything. Have you discussed this with her doctor? I know several people on this web site use melatonin to help with sleep. It's not habit forming and you can get it over the counter. You need your sleep particularly if you have a sleep disorder! I do hope something can be done for her and for you. Sending you gentle hugs with my one wing. Tizzy
Coping in Canada said...
Welcome Upnorth, I am from upnorth myself, in Canada. My mom is 93 and dozes a lot too. However, she does sleep all night for which I am very thankful. Some good suggestions already from others on how to keep your mom busy.
Becca13 said...
Welcome Upnorthgma! I am a 24/7 caregiver for my DH (dear husband) who was diagnosed with AlzD in May of 2011. He was a workaholic with no outside interest before he retired in 06. Now that he is retired he has no interest in doing anything. He is almost 75. I relate to your delima but have no suggestions. Oh, by the way I live on the gulf coast of Florida. Hugs to you! ♥
LaurSavvy said...
Welcome upnorth. I look after my mother in law (MIL) 24/7 now but I did work on an ALZ/dem unit in a nursing facility. Getting their schedules messed up is pretty typical not to say it isn't unsettling. These people in this group are phenomenal as stary says we hang on to each other and hold each other up. Keep posting and you will be amazed how much information and support you will receive. I'm in NE Pennsylvania.
Gatfly said...
Welcome UNG! ♥ love the name! My folks are in an Assisted Living (AL) apt., so I don't have the daily stuff to deal with, but there are PLENTY on here, who do ! What part of the country (or what country) are you from? I'm in central Wisconsin. ♥
staryskies said...
hi upnorthgma. are you from up north? glad you have decided to join us. we are the QWA, one winged angels. wwe have the other wing wrapped around each other to help along the way. we are all here to help, advise, cry, occasionally rant and rave and vent to each other. i suggest you take your mom to senior services if they have one n your area. my mom is the same age as yours and she goes every monday wednesday and friday. they have so many activities and people to chat with and she really enjoys it. stary
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Caring for a Spouse: Beginning Sad Journey & He Doesn't Realize Magnitude

An anonymous caregiver said...
I am just beginning this sad journey with my beloved partner. I don't believe he realizes the magnitude of what's happening. I'm grateful for any support you may be able to give and that I may be able to give back to all of you. Thank you!
from the Moderate Stage Support Group
CaringDenise said...

Thank you everyone for warmly welcoming this new member to this Stage Group! In addition to this support group, Steps & Stages also includes a guide for each stage of this horrible disease. Here's an overview as a starting point (with links to each stage-based guide for caregivers): https://www.caring.com/articles/alzheimers-stages Please keep visiting your Custom Care Guide as well, to get expert tips specific to your loved one's condition. I hope these suggestions are helpful to you.

gilwayw said...
I have no excuses for missing this post from last week. Sorry, anonymous, for not responding earlier. I've fallen behind on my emails again. I'm a mess if I don't check them three or four times a day, but who has the time when we are 24/7 caregivers? Welcome to the family! Don't know what I'd do without my friends on this caregivers' site. I care for my hubby who has Alzheimer's. We've been at it for several years. It doesn't get easier, but you do have plateaus in order to catch your breath. Hope you'll stay with us so we can get to know you and your partner. Consider yourself hugged...........Gillian (Gilligan) ♥♥
Gatfly said...
I see this post was from last week - busy one for me - so I missed seeing this earlier. WELCOME!!!! I'm pretty sure I fall in the same category as Window(pain), not very much useful information, but I try to help folks see their better selves - mostly through humor. hee, hee.....hang around and you will have more friends/acquaintances than you can shake a stick at - but please don't shake that stick! ♥ hugs!
Piver said...
Add my welcome. I've been at this 8 years, watching my well educated, competent man revert to childhood but very slowly. We advise you to use the 2 drugs available, stay in touch with his specialist as there can be really great help there, and start educating yourself now! If I knew then,,, But so much of what I avail myself of now for my constant learning & adjusting to his changes was not available when we started this journey. I recommend you read all our comments by letting Caring.com know you want an e-mail about every one. Read MayoClinic.com & Alzheimer'sreadingroom.com as being the best help I have found other than this splendid Support Group! You will find the folks @ Caring.com very compassionate & helpful so use your Feedback button to the right whenever you need to. There's a lot of help right here. And keep posting, telling us more. Piver
WBRS said...
You are being welcomed to this group with opened wings to help you fly thru all the good and rough days to come. It is a very rocky road and could definetly be a long one but as caregivers we all get thru it with eachothers help warmth and guidance. I know I couldnt have made it thru a day many a time without all the support I get here.Anytime of the day usually someone is here to help you in any manner we can and know that we care for eachother as a sister and brother group No judgements or questions. Just support love and guidance is here for all. better yet its better than some sister and brother relationships its for real We are here for you
Starryeyes said...
I'll be glad to give you any help I can. My husband of 50 years was also very sharp prior to this illness -- he could add fractions in his head while I was just sharpening my pencil! My new mantra is "He can't be in my world, I have to be in his." If you feel it would be helpful, try my blog at http://daybydaywiththebigterriblea.wordpress.com/
window said...
Dear anonymous...WELCOME! This is a super group, filled with characters of all kinds. I am one of the crazier ones but most are just really sweet and helpful. You are on a tough road and just as you think you have a grip on it, your GPS goes on the blink! Stick with us, ask any questions you come up with and feel free to jump into any of the threads that interest you. Usually someone on here can relate to a given situation and even if we don't we know that we may run into that kind of thing the next day.
Tizzy said...
Hello anonymous and welcome! Your partner may not be able to comprehend the magnitude of this horrid disease. You have definitely come to the right place for support! The best thing you can do is arm yourself with all the knowledge about this disease you are able to absorb. Knowledge is power!! I hope you come back and tell us a bit more about your situation such as has your partner been diagnosed by a Dr. or a neurologist? How far is he into the disease? Do you have anyone to help you with his care? Looking forward to getting to know you and your situation a bit better. Tizzy
An anonymous caregiver said...
Hi Aviovaimo - Thank you for your kind words.We have been together 22 years and have enjoyed each others company immensely. He had a steel trap mind that would rival an encyclopedia. He's just an all around terrific person. I plan on being here for him no matter what and I thank you for your support.
aviovaimo said...
Hello Anonymous---welcome to our group ♥This is indeed a journey and much sadness comes with it but also moments of love and closeness and for me personally it has been a journey of learning patience,compassion and just life.......tell us a bit more of yourself and your partner so we get to know your story.You are not alone ♥
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Caregiver Wellness: Overcoming Challenges Makes Life Meaningful

kathy50 said...
It is surprising to me how rapidly I can deteriorate in the face of Mom's symptoms. I go along not feeling particularly stressed, but then putting her to bed when she keeps taking off the things she just put on, and putting everything on backwards because she thinks she's putting them on frontwards, just sends me around the bend. I'm not proud of it, and I wasn't outwardly bad with her, but I wasn't my usual pleasant, patient self when I said goodnight. Jill reminded me that she can't do any better, which I know, but sometimes I can't do any better either. And then I come out on the back porch to get myself together, and remember that she had to cut down my favorite tree this afternoon because it had died. There's such a big hole in the yard, and I feel so exposed and kind of unprotected ----- just like not having my Mom around. Tonight the tears are flowing and I think I'll just cash it in and go to bed early.
from the Severe Stage Support Group
CaringDenise said...

Hi everyone, Thanks for sharing your caregiving stories and support for one another! As you can see, you are not alone in the challenges and feelings you've expressed. Caring.com regularly surveys members of this community, and has found that the majority of family caregivers are deeply impacted by the financial and emotional costs of caring for their loved ones. Here are some resources that can help...

  • Caregiver Wellness Solution Center: https://www.caring.com/caregiver-wellness This includes tips for diet, sleep, finding time for self-care and handling stress and burnout.

  • Taking a break from caregiving is also important. Here are 8 ways to get some respite: https://www.caring.com/articles/respite-care

  • Take this quiz to assess your risk for caregiver burnout, and then learn strategies every caregiver needs: https://www.caring.com/articles/caregiver-burnout-quiz

  • If you're not sure if you're experiencing burnout or depression, this information can assist you: https://www.caring.com/caregiver-stress Please discuss this concern with your doctor(s) as well.

Hope these suggestions are helpful to you!

need2understand said...

I have all day alone to plan or else I would be mindless. My doctor's visit went well, he told me to do something exciting and go on vacation and that I need to take care of myself first. I think this is true for all of us and if we don't do this, it will affect our health. My husband is quick, ready to dispute anything I say, however, he is 95% wrong but it does not stop him. He and I were watching Family Feud with the question (a bad question, I think) was what animal would you hate to mate with. answers some gave porcupine, elephant etc; I yelled out "SKUNK" my husband looked puzzled and said, "SKUNK, that could not be right because they hatch eggs, they lay eggs, they don't mate!" I asked him didn't chickens and ducks lay eggs and he said yes, I then stated that they lay eggs yet they mate. It took him a while to process the statement but after a bit, he said, "I guess you are right!" Yet he is still pretty good about discussing the bible facts. so all is not lost to him and also yet working.

Goingcrazi said...
Big hugs to you guys that have hubbys with this. I think I would lose my mind. Truly you are amazing to deal with this. Mamaw is hard enough even with hubbys help. If it were me alone like you guys I think I would have given up a long time ago!!
JuJuB said...
To Field of Grace...thank goodness for frozen dinners, veggies, etc. Don't know what I'd do if I had to actually plan and cook meals from scratch.
need2understand said...
and so you will get it together, we have faith in you
Field of Grace said...
Yes so does Gary. (Since starting the sleeping pills..) BUT a big blessing to be rested and ready for another day.!!! Oh by bed time I am spent. Often way before that... Do you all find it hard to get your life together some days? I can't even plan meal anymore. We do ok for Breakfast and some lunch... but supper time... I am brain dead... and can't even THINK of what I could fix or we could eat. I have to get this together~ I really do.
JuJuB said...
I understand your feelings and thoughts...I start the day with the best intentions, but by bed time, I am pulling my hair out. At least Neal sleeps well, so I can start fresh the next morning.
need2understand said...
Grace, could you put him to bed a bit earlier than normal, get him asleep and then you go and have a quiet time alone? Is this possible? I would also resent h aving to go to bed earlier just to placate him if I were you also. They change so rapidly. Has anyone noticed their mate actually begin to stare at women young and old? He will even turn around and look at them (in my presence) sometimes bumping into things while looking? Does he think that he is attractive now with all of his visible body break down? It is kind of funny to me and at other times, I resent it because it is disrespectful. If I refer to this, he will say something to the effect that, "Oh, I was looking because she is short or she is tall or way she walking, or she looks like somebody!" note: he does not do this with men
notunderstandingthis said...
"Challenges are what make life interesting; overcoming them is what makes life meaningful." sending hugs your way... sometimes God gives us those tears to cleanse our sorrows...
Gug said...
To field if grace and kathy.......... I feel yhe same way at night it is a struggle and sometimes I am not proud of my self the way I behave.i feel I have not truley accepted this dx although it has been 6 years100%.iam always wishing for my old spouse. My son was over last night he is good with him but I know it is breaking his heart. We have the 2 youngest grandboys til weds that should be fun!!!!!!!!!!!oh well good days and bad days. Nothing I can't handle with the help from the angels. Pauline
lovinghim said...
Sorry for a bad day....tomorrow will be better. Hugs. Caryl
Field of Grace said...
Sorry for your hard day.. and the evening. I know I can have a pretty good day... like you said not feeling all that stressed.. then bed time comes.!! And we go to bed together. He will not go without me, or before. It is a battle to get him undressed every night... then If I leave the room for even 10 sec. he has already started to dress again. I often don't do well with this either. I am tired... ready to GO TO BED. And I just want him to help a bit... and NOT fight me. I have those nights I go to bed crying too... sorry you had one of those.. Hugs to you!
DeSings said...
I'm sorry it's been a difficult day. Sometimes we just have to cry for all our losses. Sometimes when we see the loss it reminds us of unseeable losses. Hugs, Kathy. DeAnna
need2understand said...
Awww, Karthy, this too shall pass. WE all have our moments but I guess the best thing to do is reflect back on some of the more pleasant memories. That should put a smile on your face again. I hope so.
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Alzheimer's Symptoms: Our Friends Ricky Nelson, Whitney Houston & Elton John

Mojo1-TX said...
Over the weekend, my Mom told my cousins that she had a really nice dinner with my husband's mother a few weeks ago. She passed away about 5 years ago.
from the Severe Stage Support Group
CaringDenise said...
Hi everyone, Thanks for sharing your stories and experiences! Here is some expert input for this symptom of dementia... From Ask & Answer: * [My mother believes she is talking to the dead. Should I be concerned?](https://www.caring.com/questions/hallucinations-and-alzheimers) * [Is it common to have hallucinations with Alzheimer's?](https://www.caring.com/questions/alzheimers-hallucinations) * [How do we deal with Dad's dementia delusions?](https://www.caring.com/questions/delusions-with-dementia) From the Custom Care Guide: * [Alzheimer's Symptom: Hallucinates -- sees, hears, smells things that aren't real](https://www.caring.com/symptoms/alzheimers-symptoms/hallucinations) I hope this is helpful!
An anonymous caregiver said...
Just so you all know, my mom dated Elton John. I guess that was before he was gay.lol
Mylovinggrandmother! said...
When the singer Whitney Houston passed my mom says she attended school with Whitney in Houston. Poor mom she is confused , I tried to correct her but what was I thinking. The next time she mentioned this I said, "that's nice." Since I agreed with her she has not mention this situation again.
langdon said...
I think things get really missed up in their past.My husband loved music One of his favorite singers was Rickie Nelson.On sunday we watched part of a show of Rickie Nelson and my husband sobbed that he missed his friend Rickie who he sang withand worked.I just listened and soothed him without trying to correct the next day their was no mention
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