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Dementia/Alzheimer's and Being the caregiver

By December 25, 2010 - 5:11pm

Yesterday I posted: Dementia/Alzheimer's and Being the caregiver
I'd like very much to be part of this group and learn how I can be a better caregiving spouse, however, now he is in a home, so I'm not the main caregiver! I realize that so much of my problem is ME and not wanting to give up control over his care, etc. This morning I went there to have Christmas Breakfast with him (Hartmann) and the day has not meaning for him. I finally admitted to myself that it is not dementia it has progress to Alzheimer's, he has all the symptoms, now:
"The symptoms of Alzheimer's disease include: Mood changes: depression, paranoia, agitation, anxiety, selfishness, childish behavior Disorientation, confusion, inattention, loss of memory of recent events, inability to retain new information Problems performing familiar tasks Language difficulty, such as problems finding the right word or phrase"
I look forward to being part of this group!
Respectfully, Princeline Roxbury, Phx, AZ

By HERWriter Guide September 24, 2011 - 3:03pm

Hi again zoeedam,

Thanks for the update - I do think that sibling support will really be necessary but I can see that you are the go-between for them and your mom and it's funny, as that seems to happen a lot in families.

I really hope they pull together for her sake. We're all busy but we all have but 24 hours is a day and that goes for you too! If you can do all this care for your mom, they certainly should be able to do some part.

Keep us posted!

September 24, 2011 - 3:03pm
By September 19, 2011 - 7:58am

thank u so much susan!!! lots of lil nuggets of info!! as far as our financial situation, well mom has medi/medi and is on fixed income.. i am not in a good financial situation, they took my SOCIAL SECURITY from me in sept. long story, but i am now appealing. i have lupus, firbromayagia, diabetes (under control), etc, etc...lol...at 50 im a mess...but could be worse right? but i will so find out what is out there for mom. as far as my siblings go. well i have two brothers who live in the same state, one is only like 40 mins away. the other is 6 hours. all my siblings always go thru me to see how mom is..they cannot handle talking to her on the phone..sad i know right? but yet they can vent when need be. uggh!! just reached out to them this morn via email, because they do not always respond to my calls or texts. they are busy. got one response from the brother six hours away and i figured as much...no support...he has issues. now my one sis i talk to almost everyday...lol..she is like talking to mom in regards to her emotions...lol...my brother who lives closer, well he does try to talk to mom every now and then...i think. there is more...but i have to go to an appt...thanks again...smooches!!

September 19, 2011 - 7:58am
By HERWriter Guide September 17, 2011 - 7:56am

Hi zooeadam

Thanks for your post and what a wonderful daughter you are!

I think it was an excellent idea to go with her to the doctor and I think your Mom was actually very brave to ask for the dementia test. Most people would be (understandably) in denial about it so I think this took a lot of courage on her part.

As a caregiver (if you move in with her), you will be under a bit more stress - there is no denying that. And she may become more and more dependent on you as time goes on. This is something you need to know beforehand.

I don't know your (or her) financial status but hiring a home help aid might be a good idea so that you can get a break at times, especially on the weekends.

Do you work during the week? If so, will she be ok on her own during the day? There will lots of little things to work out first. Make sure she is included in all decisions and that she is still in charge of some things around the home (like laundry or dusting - rather than cooking or something that could be a little dangerous, given her memory lapses or forgetfulness).

Also make sure that your siblings don't think that they can now depend on you all the time. They can take your mom for a weekend or a day out - a way for them to stay connected to their mom and vice-verse and also another way for you to get a break.

Make sure you mom has a living will, too. That's very important as we get older (my husband and I even have them!).

So you will need to work out the financials, the practicals, the emotionals.

I think you might be doing a wonderful thing by opting to live together, but I can see you know there will be some challenges. Just be aware of them and have a game plan beforehand.

I know your mom isn't in the full throes of dementia, nor has she yet had a diagnosis but contacting the Alzheimer's Association for help and tips might also be a good idea. You can start here: http://www.empowher.com/reproductive-system/content/are-alternative-or-natural-treatments-menopause-worth-it

I hope this helps you, even a little, zoeeadam. We hope to hear back from you!


September 17, 2011 - 7:56am
By September 17, 2011 - 1:16am

hello susan & all of you. i am joining this group because i believe my mother has the beginning stages of dimentia/alzheimer's. some years ago my brothers & sisters thought maybe..but when we looked up the symptoms/criteria we said nahhh...but then last summer we noticed some major changes in her behavior and now she seems to have more of the symptoms. we do not live together but are like a mile and a half away. her diabetes is not kept under control all the time. she is also on like 3 diff anxiety/depression meds. one of which her doc is trying to wean her off of. she reverts back to the past alot, things that have maybe nothing to do with the conversation, she forgets things, where she puts them, or is driving and gets lost, but eventually finds her way back. argumentative, depressed regardless of the meds...more sensitive than normal, forgets where she puts things, thinks she has told us something and hasnt.,etc...now with this said, she did go to the doctors on friday and requested to get all this checked out. i ws suppose to go with her and i and am thankful she actually remembered to ask to be tested for the dimentia and things. i know it is getting to her. she is a beautiful 67 yr old woman who doesnt look her age attttt alll...and is always there for others, rather tries to overextend herself, puts others first. i love her with all my heart & told her the other day we need to work on living 2gether..she cannot be alone. she is worried bcause we are both so head strong. i am a very patient person who has her own health issues, & yes it can be trying at times, but she is my mom and whatever time is left i want to do the best and be with her. so any advice u can give me wld help. i used to care for a senior citizen woman who ws bedridden and in the early stages of alzheimers & know its hard.

September 17, 2011 - 1:16am
By HERWriter Guide September 4, 2011 - 6:39pm

Hi Sherryl

Thanks for your message.

I'm so sorry about what your brother did to your mom. I hope he is never let near her again. Elder abuse in rampant in this country but isn't talked about like child abuse is.

Elder abuse does happen in some care facilities too but certainly not all, not even most. But there are a few bad apples out there, to be sure.

Have you thought about having home help for you mom? You can go through an agency or someplace like Visiting Angels. That way, your mom can get good care under your own supervision and you can get the break you need and deserve! It's not super cheap but far less expensive than other ways of getting care.

What you you think?

September 4, 2011 - 6:39pm
By August 25, 2011 - 7:53pm

I'm not sure what I even want here. I feel my only hope is for a breakthrough in research that will cure dementia. I have mild cognitive impairment. My mother has severe dementia. She lives at home with me. She is combative, and is into everything. I am going to ask about meds when when we go the doctor in late September. My fear of putting my mother in a home is that they can't let her eat all day like I do. She was almost starved to death by my brother. She is 5'5" and weighs 120 pounds. She doesn't have much to spare. I am afraid they would do what they could and she would eventually die. I also know the statistics are dreadful. Too many residents die within the first year. I have a great respect for life, however, many people think I shouldn't even consider what would happen to her and take care of myself. I have a problem with that.

August 25, 2011 - 7:53pm
By HERWriter Guide January 6, 2011 - 8:41am

Hi Princeline

Thanks for your comments!

You are still the main caregiver of your husband even though your husband is in a nursing home now. Nursing homes can be great places; they take good care of the residents needs and wants and activity/recreation and religious groups focus in emotional and spiritual care.

But it's you who steers the ship in terms of his plan of care (are you attending these meetings every 3 months? If not, I highly advice you to) and make sure you spend time looking around his facility when you are there, as well as providing a lot of emotional support and lots of touching.

Contact the Alzheimer's Association for caregiver support - it's very important that you receive lots of support too. And make sure you are an integral part of his life at his home (you have the right to check nursing charts to review his physical care and emotional well-being) so that you remain main caregiver in his life.

And use the fact that he is now in a new home to relax, to go shopping, to read/work/do hobbies....whatever you still do. Don't give any of that up and do not feel guilty that you are still living your own life. That is crucial to your survival and something your husband wants for you too.

January 6, 2011 - 8:41am

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This support group is for all who need someone to listen to their frustrations, fears, and concerns when dealing with a spouse who has been diagnosed with a dementia. And for those of us who need someone to laugh with and cry with too. We all need to feel like someone out there can relate to our situation. We all need to share our highs and lows with someone who's been there and those who are still there trying to hang in there for our "best friend" our spouse.




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