Is anyone a primary caregiver for an Alzheimer parent?

[bamademo]

I got that happy task this past March when my Dad died. I've got POA and I'm Executor. I'm about to move into the family home and I'm having work done on it to get it ready to sell. Mom is still lucid enough to object to everything I'm trying to do and she does crazy shit like putting the mop in the toilet to mop kitchen floor which I confronted her with and she screamed she was going to put Clorox on it. The house hasn't had really good upkeep for 10 years but it's not in bad shape. She argues with me over such things as replacing back door which has non-insulated window panes and a doggy door with a solid door that is more energy effiecient and secure. I'm going to have to sit her down and tell her she doesn't have any control and say anymore and I know that will freak her but she's very Scarlett O'Hara beyotch Southern Belle from Hell right now. She lies to me and threatens to call police on me all the time. I'm getting to the point where I don't even feel guilty about being a bitch to her at times.

[Captain Hilts]

1. She's got dementia. I've been there. It's about control. nt

[Kookaburra]

2. Going through the same nightmare with my mom too

I don't really have any advice, except that when she gets like this I take the same action I would with a 3 year old who is throwing a tantrum. It's okay for you to lose your temper -- you're only human, after all -- but don't expect her to understand why you're getting angry. She's losing control of her life, and she's terrified, and all she can do is lash out at you. It sucks, and I'm so sorry you're having to go through it.

:hug:

[janx]

3. You might benefit by finding a support group.

My aunt had Alzheimer's. My mother did not, but she was fairly negative during the anger stage of her death. Alzheimer's is different though, and it's very demanding.

People with Alzheimer's, like my aunt, can be the most intelligent and caring people in the world, but when that disease takes over their brains, they have no idea what they're doing. They have crazy outbursts and can be a danger to themselves.

My heart goes out to you; please find some kind of support group. One might be available from a hospital in your area.

[goclark]

51. When you are the sole care giver it's hard to go to get support

My Mom has Alzheimer's and it is heartbreaking.

I don't have the time to do anything on a regular basis because I can only leave her with a Senior Sitter or take her with me.

So many people say, "just get some one to take care of her and you'll feel better." Or. "Take her to a Senior Center and she will love it!" --- No she won't. She doesn't know how to interact if I'm not with her or my cousins or other very close friends.

I just got back from a beautiful 5 day vacation in Palm Springs -- my wonderful cousins stayed with her, I would rather pay my family than someone else.

I feel like I never left home. It stays with you, even on vacation.

I have been to an excellent Support Group. However, I just spent 45 minutes looking for her denture(it was wrapped up in a piece of tissue and stuck in the back of a draw.) Emotions and sorrow and frustration take over and you feel so guilty.

Everything learned is gone in an instant -- don't have time to call anyone for advice, just roll up in a ball and feel my blood pressure rise.

She has been on three medications -- nothing worked. She has negative reactions to all of them.

What works best is WATER -- the brain must have water. The days when I can sit with her and watch her sip by sip -- she does better.

It's just so hard to take care of the one person that you love more than life itself, the person that took care of YOU and now the tables are turned -- :cry:

[Javaman]

63. It's so hard.

There was a great segment on a podcast I listen to called "futurecast", talking about the care for our parents.

It talked about the guilt, the shame and the sadness.

It brought up some interesting observations.

Once upon a time in this nation, before there was a Medicaid or social security or any programs available for the elderly, people would have larger families as insurance in their old age. It was assumed back then that the children would take care of the parents when they got older. As we modernized as a society, people had fewer children. So now older people are left, sometimes, with no children to care for them, as a result, the assisted living industry took off.

The concept of multi-generational households are almost completely a thing of the past.

So now it's the exception rather than the rule for children to take care of their elderly parents.

However, the guilt associated with ones "duty" to take care of ones parents still remains. They still are our parents and we want them to be safe. After all they did it for us, right?

There is so much at play here psychologically, emotionally and socially, it's really difficult to describe how it crosses, melds, and combines among these three traits while trying to talk about anyone of them singularly.

There is such a duality in society regarding our parents: on one hand we want them to get the best possible care they can, but at the same time we live in fear that they will become the subject of a 60 minutes investigation. We also, via societal belief, assume that we are bad children if we seem or are deemed unable to properly take care of our parents. Not everyone is cut out to be a care giver, but we are sometimes shamed into being forced into being one.

Then we hear the horror stories from the other side of the coin, where some "ungrateful child" treated his elderly parent like crap. Once again, those of us who do care, feel that much more guilty as if we aren't doing enough.

The over arching issue also becomes one of finances. It's not cheap to have ones parents live in assisted living. Not everyone saved or prepared for old age, so then the task falls upon either the state (where there is no living child or relative) or a child who is not in a financial position to take on the additional task of caring for ones elderly parent.

So much is at play, so much baggage, so many memories.

I really do understand your plight.

On a personal note: I wish we did actually have real national health care. One which provides some sort of financial break for those caring for ones own parents. But you know what they say about wishes, right? :/

take care.

[Scurrilous]

4. Buy her a bottle of wine.

My ancient Mother is hell on wheels.

Wine seems to calm her down a bit. :thumbsup:

[MUAD_DIB]

12. Not a good idea if she is on meds. It cold make things worse.

[Dappleganger]

41. This is irresponsible for someone who has ALZ and is on meds.

I mean, really.

[Walk away]

5. Have you spoken to her doctors?

If she has Alzheimers she is likely on medications to help her deal with her symptoms at the very least. I am guessing that her doctor has had to adjust her meds after your Dad died. Maybe she needs another evaluation.

This is really stressful for the both of you. She may need a little help to stay calm through this. It can't be good for your health or hers.

[bamademo]

6. She's on Arricept and Dr. said I could increase in I needed to. I feed her cheap Champagne ...

she used to love. Andre Brut. Sweet boyfriend (wish there was a better word since we're in our 50's) and we loaded her up. She actually was a little more lucid.

[Walk away]

17. good luck and don't blame yourself for feeling frustrated and unhappy.

It's a frustrating and unhappy situation. Take it from someone who went through it years ago.

What you are doing is a thankless task but a heroic one. Pat yourself on the back everyday. When everything goes back to normal (whatever that is) you will be left with a few more gray hairs and a deeper understanding of who you are and how you cope with life. Maybe not always perfectly or gracefully but straight on and fully.

[inna]

56. Huh? You "feed her cheap Champagne"??? WTF?

[vanboggie]

58. Good God

Alcohol can cancel out the effects of Aricept and cause drowsiness, dizziness, fainting. Having cared for my own mom with dementia and a brain injury from a bad fall, I could have a lot of empathy for you. But feeding her cheap booze and talking about getting her money? I feel sorry for both of you.

[Raine]

7. I was

I took care of my father who had dementia for 3 years. It was the hardest thing I've ever done and even though he's been gone now for two years I'm still trying to get back control of my life. My world was taking care of him and I put my own life on hold. The rest of the world moved on sometimes I feel like Rip Van Winkle. I searched out some internet support groups. It was a BIG help being able to communicate with people who understood exactly what I was going thru. A BIG :hug: to you cause I know you sure can use one.

[bamademo]

10. I can emphathize with you but I'm in my 50's and I've seen more horrible things...

should see. I'm fairly numb for the most of the time. I get sad for my Mother but I'm just sorta like, this is how's it'sgonna be, deal with it, and you don't have a choice. She'll go off mad of crying and 10 minutes and 10 minutes later she's sweet Mama.
I really hate to break it to her that I'm selling the house she's lived in for almost 50 years but in some ways I think it will be good. It's like the House of Usher to me. A Pall hangs over it. She doesn't want to do a thing that my Father constructed although it's some of the most bizarre construction in the world (back story, He went to Auburn University and my bro and I went to University of Alabama. Roll Tide National Champs of 2009! Long story short, she doesn't want one thing undone even if it's rotting. I'm just getting it done.

[Dappleganger]

42. delete

nevermind

[inna]

57. my exact reaction as well.

[BoWanZi]

8. I have no avice other than a support group by my heart goes out to you and your parent.

Losing my mind to that disease is one thing that scares me the most.

[Cleita]

9. No, but I have known a few and honestly you need help.

All well meaning family members try but it's too hard. Mom needs to go to a home that specializes in dealing with these patients. You need to do what needs to be done to sell. She will kick and scream at first, but in a well run home, the patients eventually start liking it. They have company and they don't have to worry about anything because it's done for them. Of course you need to visit them every day too. I hope you do.

[bamademo]

13. I have to hang on to her for 2 or 3 years or they will take my inheritance.

That sounds cold blooded but I'm not losing $200,000 or more to Medicaid in the state of Alabama

[Cleita]

14. Then get some help. You can't do it alone. n/t

[Raine]

23. It's not cold blooded at all

you do have to think of yourself, you're life will go on long after this is over. I know there is such a thing here in CA as Elder Attorneys that specialize in helping the familys of elder people to navigate thru the financial issues.

[Dappleganger]

43. LOL, what?

Yes, it does sound cold-blooded. I wish that I'd not responded to any of your posts.

Why don't you pay someone to come and take care of her since you're just after the money, for chrissakes. My sister and I don't want a DIME from my father's home or his nestegg. Every single penny we want to be used to care for him.

It sounds as if the apple doesn't fall from the tree.


BTW, you've posted this on the forum before and people wised up to what you're doing. I can't believe you're doing it again.

[Javaman]

65. You obviously have never been in the position of the poster...

you know how the saying goes, "try walking a mile in someone else's shoes".

It's the nature of how the system is set up and until you have experienced what she and many other people have experienced you have absolutely no idea of the number of incredibly heart wrenching decisions you have to make.

Sometimes, they come across as being cold blooded, but like I said, the way the system is set up, many times, you don't have a choice. And no matter what you do, you come across as "the bad guy".

[Javaman]

64. That's not cold blooded...

it's the reality of how our system is set up.

[MUAD_DIB]

11. We're on the last lap with my dad.

I would like to tell you that it will be easy, but it won't


Far from it...

What medications is she on?

[DURHAM D]

15. My Mother had Alzheimer's and my Dad had Lewy body.

Both were very paranoid and did not trust the people closest to them in the earlier stages. Sitting her down and talking to her will not change anything. For one thing she won't remember and also she knows she is losing ground and is embarrassed. The embarrassment will manifest itself as anger.

Do talk to her Doctor about medication for depression, etc. And find someone to come in so you can get out on a regular basis.

The way we quickly learned to deal with my parents is to go "where they are". Don't try to pull them into the moment or into reality. Go where they have gone. Talk about what they want to talk about - over and over again.

Your journey will be difficult but you will learn a lot about yourself.

Both of my parents were autopsied. That is how we learned my Dad had Lewy body because he was not correctly diagnosed.

About the door - just tell her that you thought she had a really good idea when she suggested that it be changed out.

[bamademo]

18. What is Lewy bodty? Lou Gehrigs?

[DURHAM D]

27. Lewy Body is a type of dementia.

We (us kids) knew that our parents had very different diseases even though they both had the same diagnosis and basically received the same treatment/meds. That is why we decided on the autopsies and we also thought it might help with research.

Good luck to you. I hope you have others who can help/support you.

[Cerridwen]

16. I am. First, *you* need to call the cops. Nope, I'm not kidding.

Where I live we have a special elder crimes task force. You need to contact them and let them know your situation to protect yourself. If your mom *does* call them, you're at least partly covered.

That removes that part of the nightmare.

Arguing back can be dangerous; for You and Your Mother. It is not unusual for a dementia/Alzheimer's patient to become violent. How are you going to protect yourself while not injuring your mom? Then, if the cops get involved... Another reason to report your situation to that taskforce if there is such in your area.

Learn to say, "Yes, mom" and walk away; I'm still working on this. After you've walked away, do what you were planning to do anyway. If you can make changes and fixes without her around, do so. Do you have someone who can take her for a drive, take her for the w/e, or something similar? Have those projects done then. She may still get angry and rage at you. Practice saying, "Yes, mom" and walk away.

You might want to proceed to guardianship rather than just POA. That will make some legal things easier for you.

Any 3rd party you can call on in an emergency to help defuse the situation, help with caretaking, help with shopping or getting mom out of the house? See if you can find 1 or 5 people to be on standby when you need them.

From everything I've read about dementia and Alzheimer's, the facade of a person is ripped away and what's left can be some very ugly childish behavior in adult form. It's scary and maddening; as you've learned.

I have stories to tell but this is about you and I'm not sure my stories will help you. If stories and shared experiences would help you, here is a link to one of many online support forums. It's quite active and they have volunteers with dementia and Alzheimer's treatment experience AND they have a toll-free hotline for those times you need to scream. It's the Alzheimer's Association online community http://alzheimers.infopop.cc/eve/ubb.x go to the Caregiver's Forum. Go to their main page http://www.alz.org/index.asp for additional information. The forum members can give a lot of good information about community resources as well; in home services, adult day care, and face-to-face support groups.

Peace be with you during this trying time. Please remember to care for yourself as you care for your mother. Please try to remember to not take it personally (I suck at this part); it's the disease. It's sad, infuriating, scary, horrific, lonely, exhausting, debilitating, and a whole lot of other adjectives you've already encountered; and they're usually all mashed up together into one big snarl of feelings.

Good luck.

:hug:

[Cleita]

20. This is excellent advice Cerridwen. Thank you. n/t

[Cerridwen]

22. Thank you, Cleita. There's a load of good advice in this thread.

It's amazing to see all the different angles. I presume they're based on the different pre-dementia relationships and economic concerns.

It should be criminal what we expect people to do to take care of their family(ies) when their health fails and they can no longer take care of themself(ves). It takes a village to raise a child; then it takes a village to help that "child" in their final years. We suck at community.

[bamademo]

25. Wow! Thanks very much for that. It was exact;ly what I needed.

I realize that my friends get sick of hearing my shit. Until it's their turn. Preesh!)-:

[Cerridwen]

26. It'll help - a lot. Go rant and rave and say all the things that only

someone who is in it right.this.second. can understand.

Don't forget to protect yourself with the cops and the legal stuff, too. It makes it much easier to sleep at night without that threat and fear hanging over your head.

I learned that part at the forums I gave you the link to.

[bamademo]

31. I'm getting Guardianship plus Excutar and POA

For the first time in my life, I'm it total control of something. :+)

[Cerridwen]

33. Erm, please don't hate me for this...

The minute you're appointed Guardian, The Court is in control of everything. Selling her house? Need court approval. She needs "major surgery"? Court approval. Moving out of the state? Court approval. Selling her car, hiring a lawyer, etc. Grab the guardianship handbook if there's one at your family court website and study up.

She falls and hurts herself? Wait for the raised eyebrows from the doc as s/he asks where you were when she fell. I had this happen. Any bump or bruise and you're getting "the look."

You also get 100% responsibility for her debts, her taxes (you get to file those every year), her medical payments, her SS, her credit cards, property taxes, car insurance, homeowner's insurance, and on and on.

Sorry for this news. I don't want you to walk into it blind. I did. It's not fun.

:hug:

[EFerrari]

46. Read the tone of the thread again.

[Cerridwen]

47. Compare the time of my replies.

[flaminbats]

19. please don't tear yourself down..

:hug: you aren't being a bitch, your mother still loves you but often forgets about your feelings.

taking care of a parent or grandparent who can no longer care for themselves is really tough, but at least you're getting started. Things will probably get a little better, usually moving someone out of a house they can no longer take care of is the worst part!

but enjoy what time you have left, because time flies by so quickly. your mother obviously loves you, because your actions are a reflection of how she raised you. O8) keep up the good work!

[southernyankeebelle]

21. First thing you need to do is get a hold of her primary doctor and talk with him.

You need to tell him what is going on with her and he will give you some ideas. She can't take care of herself you are in a no win situation. You must seriously think about a nursing home. She won't like it but if you keep her like this you will end up hating each other. Please talk to her doctor before you do anything. He will see about getting you further help.

[Manifestor_of_Light]

67. I talked to mom's primary doctor.

Sent him a letter asking him to outline a plan for me to fulfill. He told her to go into a nursing home.

She would not do it.

Instead, the doc shows her the letter, and they both get BENT OUT OF SHAPE at me for INTERFERING and wanting to know what to do to take care of her.

Fucking bastard.

His nickname around town is "Killer Cutshaw". I kid you not. As in "First Name Edward G."

[jillan]

24. My dad went wacko towards the end of his life. I ended up checking him into

hospice for 2 weeks and they figured out what meds to put him on. It was amazing. He went from having to be restrained (he was recovering from surgery) to being calm, cool and lovable.

I happened to run into someone I knew at the hospital. She was working for this Hospice center. I sat there and cried, telling her how hard it has been, how my dad went crazy, we had to restrain him for his safety - which was ripping my heart out. She told me to have him checked into Hospice. I first said NO way - he was not at that point, he was not dying. She told me that it's common for seniors to go a little crazy, to give it 2 weeks and then I can take him home. She was right.
My dad was in the hospital, nursing homes, under doctor's care....no one could calm him down. Hospice did.

Just something to think about.

Also - there are group homes for seniors. An actual house where they each have their own bedroom, a live-in care giver that cooks, cleans, attends to their needs. Maybe something like that might work out for your mom, if not right now, maybe down the road.


:hug: Hang in there...walk away when you need to....and don't be afraid to ask for help.

[bamademo]

28. She thinks she is some sort of Grande Dame Southern Belle.

It's my sad and sometime happy duty to bring her down from that. That's what's so horrible. I hated her for so long...because she was such a wanna be Aristocratic Southern Belle which the rest of us would ridicule her for. Now that's the role she has settled into. That's what she always wanted but never got and I'm unfortunately about to rock her world. The funny thing isthat through my volunteer work, I've made good friends with really wealthy people who could care less about my silver patterns, china patterns or who were your people.

[prolesunited]

38. I find your tone and the things you say about your mother very disturbing

My dad has Alzheimer's. Though he lives with my two brothers, he lives about a mile away and I spend as much time as I can with him. It's not all sunshine and smiles with him, either, but I would never talk about him with such disrespect and vindictiveness I've seen in your posts.

You sound like you have years of resentment toward her and seem to be taking some joy in making her pay for whatever she did or didn't do to you. But, hey, in the end, you will get your $200,000 pay off, so just hang in there.

[Poiuyt]

29. Just remember, it's not your mom behaving like that -- it's the disease

I was the primary care giver for my mother until I realized that she couldn't live on her own any more. Moving her into a nursing home was the hardest decision I ever had to make, but it was truly the best for her and for me. Mom really thrived in a home that had a good Alzheimer's war. I can't say if your mom is ready for full time care, but my mother got much better care than I was ever able to provide.

One thing I learned was the art of "Loving Deception." In other words, lying. Tell her what she wants to hear not what she should hear. You're not going to be able to reason with her anyway. If she wants to think she's Scarlett O'Hara, fine. What's the harm? Your primary goal is to keep her safe, healthy, and happy, and the way to keep her happy is to play along with her no matter what. The truth will just stress her out. Just do what's best for her and don't consult her.

It takes a little practice to be able to communicate with an Alzheimer's patient. You often have to go against your natural instincts, especially when you are lovingly deceiving her. Throw a lot of compliments at her, agree with everything she says, and talk about the good times from many years ago (they often have long term memories but not short term). Oh, and get a good support staff for yourself, people who will let you vent once in a while. Like us!

[lonestarnot]

30. That is the most difficult lesson in dealing with this illness.

It's the role of Mother or Father that makes this so difficult I think when the caregiver is the child.

[Poiuyt]

32. Yes the role reversal takes some getting used to

Taking care of your parents, who you once thought of as all-powerful, is a difficult process, and one many adult children can't handle. My feeling was that she was there for me for so many years, it was my time to return the favor.

She died four years ago, but the feelings are coming back. I'm crying now.

[lonestarnot]

37. I'm sorry.

:hug:

[bamademo]

34. No this is my Mom times 10 and I'm just now realinzing what a crazy bitch she used to be.

This is why it's so hard. I'm realized in the past few years how mentally ill she was and how much my Father kept her semi under control. However, they had to check into nursing hones in the last couple of years and he would cry because she nagged him so bad. I really don't feel a lot of sympathy for her except she old and misses her husband.

[Liquorice]

35. I feel uncomfortable with your being "in charge" of your mother with how you feel about her. nt

[prolesunited]

39. Glad I'm not the only one who sees it

[Dappleganger]

48. Not to mention

this user has posted this same story here before and rec'd very negative feedback. I posted several suggestions but deleted them when I remembered. The 'I don't want to lose my 200 thousand dollar inheritance!' is what gave it away.

Not all of us just fell off the turnip wagon.

[EFerrari]

50. Yep. This must be round 3 or 4 and it's a little more aggressive every time.

[Hekate]

59. It's becoming very disturbing, as old family dysfunction is slipping into elder abuse.

The more I read the worse I feel. I hope the OP gets serious help before she ends up deserving legal action against her.

Hekate

[proteus_lives]

52. Scary, huh?

It sounds like she actually enjoying it.

This might not end well.

[EFerrari]

45. No matter how crazy she ever was or is now

that's not a justification for abusive behavior on your part.

It doesn't give you a free pass.

[inna]

54. incredibly ugly, not just this post alone. glad i haven't rec'd this thread.

[thecrow]

36. READ THIS BOOK

"Learning to Speak Alzheimers"

And stop being mad at her for being sick. It's a disease.
If you can't deal with it, get someone who is trained to deal with it.

I had to live through this last year myself.
It's hard, but easier if you understand what the patient is going through.

Read this book! RTFM!

[tavalon]

55. I think it's pretty clear that this person is mad at her for a lot more

than her current illness. Unfortunately, when one is in the middle of taking care of someone with Alzheimer's, it's a little late to do the emotional work to forgive those past hurts. We're usually talking about years of therapy. Years that didn't happen in time.

[Dappleganger]

40. delete

Nevermind.

[csziggy]

44. Try this group

Alabama Alzheimer's Association - http://www.alz.org/index.asp

They have some resources for caregivers listed and could probably point you to something in your area.

Do take time for yourself - you cannot take care of your Mom if you are burned out. :hug:

[tsuki]

49. I know this is difficult, but I was told not to change anything. She is in

her comfort zone, and she knows where everything is. Moving a piece of furniture can be threatening. Or replacing a door.

[goclark]

53. I share your pain ~ My Mom is a doll but when I moved back home

to take care of her -- the role reversal was tough.

Now I tell her -- I'm in Charge.

Generally, she is OK with it but when the brain is having a tough day- she will get angry at me. I don't blame her, it is her house.

I have the POA thank God and that makes it easier but it's still harder than any real job that I ever had -- much harder.

I've been the sole care giver for 10 years,each year she has more difficulties.

PM me if you need someone that truly understands.

[Hekate]

60. Bamademo, someone needs to say it: you are slipping rapidly into elder abuse

This is a scary thread, once I finished reading everything you said. You got a lot of sympathy from me the first time I encountered your story, and you are still garnering a lot of sympathy from others.

But you are increasingly saying a lot of things that let us know that you have no understanding at all of what you are dealing with in a dementia patient, and that your personal history with your mother (apparently you have disliked or even hated each other for years) is completely blocking your ability to get a grip on the person she is NOW.

You are not the person who should be in this role. At. All.

Seriously modify your approach using some of the many good strategies mentioned in this thread. (Adult day care all by itself would allow you to fix the house without interference, and relieve stress on both of you.)

Otherwise, get out while you still have your self-respect.

Hekate

[NotThisTime]

61. Unfortunately yes, for 12 years... it sounds like she already has enough

symptoms for you to be concerned. It's difficult to deal with them at this stage. It's actually easier when they forget more to tell you the truth :( At this stage they are combatant because they know they are losing their faculties and they cannot control it, which in turn makes them angry...

I'm so sorry you have to deal with this....

[Javaman]

62. It's called "sunsetting" my mom went through the same exact things...

as it was explained to me by her doctor, people who experience "pre-alzheimer" symptoms will get "testy".

She knew she was in the early stages and it scared the living crap out of her, rightly so.

As a result, she rebelled against just about everything.

It's a very trying time. The best you can do, is to talk to her reasonably, tell her what's going on (she may or may not remember later), and regardless of her objections, still go through with what needs to be done.

She will object no matter what. Once you understand that, it becomes some what less stressful.

My mom is now in a assisted living home. She can no longer care for herself, nor knows who I am.

It's really tough. My thoughts are with you.

Peace.

[Manifestor_of_Light]

66. I was and it drove me completely nuts.

I was so bitter and pissed that I had her cremated and stuck her ashes in the closet.