Update on mom's dementia

[lisajl]

First off I would like to say thanks to everyone that pm'd me or let me know about their experience.

My sister and I are in for a long haul with mom.

We had a nurse come in and test her memory. It is def. gone now. She could not remember the three words the nurse told her after 1 minute.
The nurse asked her what the date was and mom said Thursday.
No, what it the date? I don't know, I don't keep track of it.

She had cable finally put in, after my sister called the cable company. Both my sister and I told her they would be there between 12-2. When I finally got a hold of mom, she started yelling at me and told me we said 10:00. No, we told you 12-2.

AAAHHH!! Yes, this is just the beginning of it, we know.

She was none too happy that my sister and I were there when the nurse was there.
Funny thing, she had the nurse come over last Sat and said my DSister and I would be there. She never told us about the meeting.
I had to work, and my DS volunteers for the Red Cross.
So, they rescheduled for Thurs.

The nurse said we don't spend enough time with mom and she needs to stay on her own as long as possible. Not what we wanted her to say in front of mom, but as long as she is not a threat to herself or anyone else, we want her on her own as well.

I am going over tomorrow with my DH to fix a few things in the apt. I know she won't care or even remember that we were there. It would be so nice to get some help from our brothers.
But, I know that is just a dream. They will not do anything for her.
It's funny, our mom has told both my Dsister and I that we were mistakes, and she did not want us. Now, here are the two she did not want taking care of her.

Sorry, think I need to go and cry now.

Thanks for listening, or reading...

Lisajl

 

[dina7]

My grandmother has Alzheimers and hers is much further along than your mother's. She does not remember anyone except for my mom. She doesn't always remember my uncle either. Those are her two children, obviously. The good thing is that she is still living in her own apartment, but with an aide living there full-time as well. She needs the aide to help her do even the most basic everyday things. It is a very sad situation, to say the least. Just know you are not alone and good luck to you.

 

[helenabear]

Lisa, my heart goes out to you I really wish I had some more comforting thoughts for you!

 

[nativetxn]

Big {{{HUGS}}} for you sweetie. I know this is a very difficult time for you. Your mother is so blessed to have two daughters who love her so much and are trying to help her.

When my mother was so very ill last summer she was diagnosed with Dementia. She <i>did</i> come out of it and is much better now.

I am praying that your mother can over come this too. If she doesn't overcome it, though, please remember that we are all here for you and that we care very much. If you just need to talk, we'll be here for you.

I'm keeping you and your mother in my prayers, my friend and I'm sending you a pm.

Katholyn

 

[cabmom]

Don't take things she says to you to heart. I know from experience it is hard to do.
Keeping you in my thoughts!

 

[meeshi]

I am so sorry you're going through this. I can't even imagine how hard this is on your family.

 

[Serena]

I'm sorry Lisa.

 

[RUDisney]

Sorry to hear this, Lisa. Thoughts, prayers and PD are on your way!

 

[Mskanga]

Lisa, I know very well what you are going through, my grandmother died of dementia years ago, my mom is here with me right now and she has alzheimers , just this afternoon she was speaking to me about my dad as "my uncle" , she did not remember who I was.
90% of the time , she does not remember who we are or where she is, she needs assistance doing everything and she gets very moody all of a sudden.
On top of that, the atrophy has affected her vision severely, she can barely see.
She's only 66, the doctors have said she should be in a daytime residence and then go home at nights, my father does not want to do that.
I don't know how much longer he will handle this, it's hard and very emotionally draining, caretakers need just as much support.
Sad to see that the independent , sharp as a tack person before, is so dependent on other people now, she cannot do anything for herself.
She is terrified of getting lost , the moment she cannot see anyone around her that she may think she knows, she cries.
She thought the other day that my kids were my sister and me when we were younger.
It's very scary.
{{{{{{{{{{hugs}}}}}}}}}}} to you my friend, this is going to be one hell of a road.

 

[LUVDSNY04]

Keeping you and your sister and your dear mom in my prayers.

You might look into someone staying with your mom during the day just to be there for company. We did that for my mother and she seemed to enjoy having someone to talk to. This woman even had my mother playing her organ again.

It's so hard and when your mom says mean things remember it's not her it's the dementia .

Take care,

 

[lisajl]

Thank you for your kind words. You know, I love my mom.
She was never very nice to my sister and I, but she is still my mom.

I feel bad for everyone who has gone through this or is going through this.
It is very difficult not to worry about her buring down the apt. building. Right now she is safe, I worry about later on down the road.
She has told us that if we put her in a home she will kill herself.
Mind you, that is when she knew what she was saying.

It is a long road, I think I am gonna need a couple pairs of shoes for this rough terrain people. Thanks again for your concern and care.

Lisa

 

[nativetxn]

Lisa, my mother said she would kill herself too, if we put her in a nursing home. She has been in a nursing facility since last September and she is improving everyday.

You have to do whatever will keep her safe. More {{{HUGS}}}

What a good daughter you are to take such good care of your mother even though your memories of your relationship are not the best.

Katholyn

 

[disneyelaine]

I've been thru this with my father.(widowed). He is in a nursing home now, dementia and kidney dialysis. Anyway we brought him home from the nursing home last summer after a 2 mth stay because we thought he had improved. He had a aide & we made visits thru out the day, but after a few weeks we saw that that was not going to be enough. Just watch out because the biggest threat is she could forget to turn off a stove, oven or iron, etc....If she can not use the phone or if you think in a fire she would not know how to call 911 or get herself out, (get confused) please consider a nursing home. It is so hard to do, but I know at least my dad is safe there. He hates it & I hate it when he keeps asking me when he is going to go home. But it comes a point of safety. Me & my sister live close so we take turns picking him up & bringing him to our homes for visits 4 times a week. That helps. You & your mom will be in my thoughts.

 

[PamOKW]

I may have missed some other posts along the way. Have you had a full work-up done on your mom? There are many causes of dementia that are not related to Alzheimer's or other degenerative diseases. One of the ones that needs to be ruled out is depression. Depression can present as dementia and some people are quick to dismiss it. If the depression is treated, the dementia may disappear as well. At a minimum, she should see a family doctor and it's probably a good idea to have her evaluated by a neurologist as well.

I'm sorry to hear you have to go through this. I'm dealing with it myself and I wouldn't wish it on anyone. As for the brothers, from what I've gathered it seems to be a male response that "that's the way it is" and they don't see a need to "do" anything. Not all men -- but a great majority seem to be this way. This is also the time to get all your mom's legal and financial affairs in order.

 

[Dan Murphy]

Passing on my good wishes, Lisa, along with my prayers, that your mom's time is good and comfortable and you and your sister do well too. My best.

 

[disneyberry]

<font face="times" size="+0">Lisajl, *hugs* i feel for you...

my grandmother suffers from dementia also. she was diagnosed about 8 years ago, and it was a slow and painful process to watch both her and my mom (who was her primary caregiver) get worse over the past 7 years. my family kept her at home for as long as possible, but finally put her in a nursing home last year. i spent many months reading up on elder care, and i led my family in visiting dozens of facilities to make sure we were choosing the best one.

my mom was/is suffering from depression due to my grandmother's decline in mental health, and she just could not bear the burden of being the caregiver anymore. my dad tried to be supportive, but he really was not able to provide much help in terms of caring for my grandmother. plus, he was in denial, and against putting her in a nursing home because he did not understand how difficult it was for my mom, and did not want the added financial burden. myself and my brothers and uncle (don't even get me started on how mad i am at my uncle for failing to provide any assistance, monetary or emotional or even visiting my grandmother... ugh.) did finally manage to push my dad in the right direction and agree to look for a nursing home. i mean, even though my grandmother is physically very healthy, she has just forgotten how to take care of herself, and requires 24x7 supervision. she started showing severe "wandering" symptoms, and one day she disappeared, and my parents had to drive up/down the nearby roads to search for her. it turned out that she'd walked down the highway!!! she needs to be reminded of everything: how to chew her food, how to button up a shirt, when to go to the bathroom, etc. luckily, she can still recognize her own family... for now. sometimes she gets us mixed up, like thinking that i am my mom, or that my brother is her brother.

anyway, the one MAJOR regret that i and my family had is that we didn't think ahead... we should've started looking for a nursing home many many years ago when my grandmother was first diagnosed. at least then, she could have had some coherent input into the process. also, the best facilities (yes, there is such a thing as a good nursing home) have LONG waitlists that take years before you reach the top of the waitlist. it is good to keep your ailing loved ones home as long as possible, but at a certain point it is just too damaging and/or dangerous to continue caregiving without professional assistance.

as for the brothers issue... i dread the day myself, when i will have to care for my parents by myself, even though there are 3 children in the family. i really wish that men would take more responsibility, but statistically women make up the large majority of caregivers, and it's really not fair. i've tried to use my mom and uncle as an example, and talked to my brothers trying to make a pact that we would all share the responsibility in the future, but i'm skeptical... *sigh*

i really wish the nursing home system in America would improve. i mean it has gotten better, but there are still so many bad facilities out there... the nursing home my grandmother is in now is pretty good, but nothing is perfect. there are just so many things about the way the rooms/halls/etc are designed that could be so much better.

anyway, most of the time my grandmother seems very happy. losing your memory can have a good side, and that is that you lose your worries and burdens. my mom has a lot of trouble seeing that... she keeps saying things such as how if she had dementia, she wouldn't want to live anymore. it's tough... i mean, our memories make up a lot of who we are. but, life in the present is still meaningful and beautiful... and if your mother's dementia truly cannot be reversed, then just try your best to make her life in the present as good as it can be while she's still here. (this is something that's easy to say to others, but hard to apply *sigh* )

do get multiple opinions from various doctors to make sure of the diagnosis. and find a support group in your area... (of course, the DIS has a mini support group going too)

anyway, sorry, i digressed a lot into my family's details... but i wish you and your family the best, and feel free to PM me if you like. and remember to take care of yourself also! you need to stay healthy so that you are strong enough to care for your mom.</font>

 

[Mskanga]

Caregivers need just as much support as patients need if not more. My mom's doctor told my sister just last year that at some point my dad would need psicological help to deal with my mom, he just recently started to admit that he can no longer deal with her all the time and needs help.
I feel useless about this because they are so far away and I can't help, my sister helps everytime she can , but she also works.
Just last night , while my mom was fixing things in her suitcase ( for the 100th time yesterday ) , my sister told me that she was going to try to convince my dad to place my mom in an assisted living facility during the day , and come home at nights. The problem is the waiting lists are so long that it could take years.
Also the cost of it is astronomical , but I know that soon we are going to have to do something.
We walked down the same road road to hell with my grandmother , it wasn't an easy decision to make to place her in a nursing home and in her case all the children were taking turns at taking care of her while also taking care of my grandfather who was her main caretaker. There came a time when nobody could handle it anymore , and she wasn't safe.
I have learned one thing this week, I will never question my dad about any decisions he makes as far as my mom's care is concerned, I think this disease is not only to kill my mom but it's also going to kill him along the way.
God bless all the caretakers out there, this disease is very overwhealming.

 

[froglady]

My mother (83) doesn't have dementia, but does suffer from short term memory loss, and often gets 'befuddled."

I was fortunate in that my neighbor's mother suffered from Alzhiemers, so he was able to give me pointers on dealing with someone with declining mental capacities.

First, and most importantly, take care of the legal issues! You need a durable power of attorney, health care designate, and living will, along with an actual will. You should also go over any funeral, etc directives NOW! Had I not done this with my parents early on, I wouldn't have known that the family owned it's own section in an old cemetary, with lots of empty room.

Do what you can to make YOUR life easier; it's going to be a long, difficult journey! Add your name to as many accounts as possible, including charge accounts. I've taken away my mother's cards (ATM and credit) as she couldn't remember making withdrawals, and would "lose" her money. I found it in very strange places. Take over all of the bill paying; arrange for automatic payments as much as possible. Most pharmacies will arrange for automatic billing after an initial credit card imprint and signature.

You might also have to set out medications in one of those weekly boxes. There are some available with a locking device so the pills can't be removed early. I also had a medic alert bracelet made with my mother's name and address, but MY phone number. When she is transferred to assisted living, or to a nursing home, I'll have a new one made with the facility's phone number.

The best thing I ever did was convincing my parents (before my father's death 2 years ago) to move to a senior's apartment facility that is about a mile from my home. It isn't assisted living, but has a daily check-in policy, sprinkler system, panic button, security, etc. It is affiliated with an assisted living facility a block away, and current residents are given priority over "outsiders." There is also a very nice nursing home within another few blocks where she will go if the need arises. I've already spoken with people there, so will not be coming in "cold."

I know how difficult dealing with aging parents can be, and my heart goes out to you. As someone told me, no matter how much you do, you'll always have guilt, because it's humanly impossible to do enough! Therefore, accept that as fact, then do as much as you can without ruining your OWN life! That will vary from person to person; we all have different limitations. Yours may be financial or time, mine might be emotional or physical, but no one else is in a position to judge us.

I'm the youngest of 5, and the only daughter. You all know the rest of THAT story.

 

[lisajl]

Wow! You all are great!
My sister is on my mom's checking account, mom just got the electronic pill dispenser...wonderful invention!
While I was over at moms last night the bell went off on it, she had to move the door up to get her pills. My DH went out to get something mom needed, then mom looked at me and said, "Did I take my pills?"
I almost lost it right there. It took everything I had not to cry.

As far as a full workup being done on her, no. My sister and I went to the doctor with her about a month ago and he said it was not due to her medication. We were suppose to keep an eye on her and write everything down. We are to report back to him in about 2 weeks. We will see what he suggests then.

Another thing, my Dh mentioned to my mom about living somewhere else. I thought, uh-oh, here we go. But, she took it quite well from him. She even named a place where she would like to live. So, I am going to check into it this week.

Which reminds me, if Fire14 is on I need to talk to her. Juli works where my mom wants to stay.
It is a wonderful facility that was built over 100 years ago. They have since updated and added assisted living facility on. It is beautiful. But, I am sure they don't have room right now. We just want to get her on the list.

Mom already has a pre-planned funeral...thank goodness.
My sister tried to have bills automatically taken out of her checking account, but after a month, mom cancelled it.

While I was there last night, I found something from the bank that said a new automatic debit would start Feb 10. I could not find it on her statement, and mom does not know what it is.
So, talked to my sister this morning, and she is going to take of that tomorrow.

Well, I think I shall spend time with my children today and let them know how much I love them.
Thanks everyone for your help.

Lisa

 

[grinningghost]

Lisajl, I'm sorry to hear about all this. I missed your previous posts, but I really feel for you. My grandmother passed away in 2000 and suffered from dementia for years. It created alot of strain in our family, to see this once strong, intelligent woman lose her mind ever so slowly. I can understand that it's very difficult for you.

I can't offer much advice except to stay the course despite the things that your mom may say - remember it's not your real mom saying those things. And don't hesitate to ask for help from outside sources if you need it - you and your sister are only two people, and this is a big job.

Here's a hug.