Alzheimer's is SO difficult!!

SadieSadieFebruary 28, 2006

I know this isn't news to you folks, but I needed to say it out loud. . . or in print. I HATE ALZHEIMER'S DISEASE!

My mom is only 73 yo and is now in the advanced stages of Alzheimer's. We moved her from assisted living to the memory care unit last July, and it's just agonizing to lose her little by little.

Three of her kids live in town, and one of us sees her every day. I actually cried out loud as I drove home after today's visit. Mom was walking around and around the hallways of the building. (Yes, the unit was built with the wanderer's habits in mind, which is great. She walks miles each day, I think.) She was having conversations with imaginary people and picking up phantom things and handing them to me. She'll rarely sit down, but I got her to sit and have a cup of coffee with me.

Most heartbreaking to me is that she still recognizes me, and tries to have a conversation. She asks me a question, which is made up of words like "Tea imagine teacher he said she will table?" and then she looks so defeated when I cannot answer her.

I know I need to attend an AZ support group! But I work full-time and help DH with our construction business. I really don't want to give up another evening out of the house. I'm tired. . . !!

So I guess I'm just venting. This is SO SAD to lose my mom like this. . . I want my mother back!!

(OT, but I want my dad back, too. We lost him to cancer 4 years ago, and I swear, as hard as it was, that was almost easier to watch. At least he only had to suffer for two months.)

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LFPB4

Sadie, it's easier if you don't try to have a conversation with her. Forget about asking questions about how she's doing or feeling. Just talk. Your voice is comforting. Talk about your work, neighbors, old friends, what you're going to have for supper, anything. Get a copy of something like Reader's Digest and read the short articles to her. It's the conversations that bother her. She can't think fast enough to hold up her end and that upsets her and makes her more confused. when she starts to say something that isn't coming out right, pat her hand and start telling her about something.
PB

    Bookmark   February 28, 2006 at 10:46PM
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chattypatty49

I agree sadie alzheimers is awful my mom has it, she is in a nh now, but was with her for 5 years before the drs said she couldn't stay at home anymore. She doesn't know me or my brother.
She can't walk anymore, but is fast in the wheel chair. I miss her and grieve for her everyday, it's like I've already lost her. I lost my dad 3 yrs ago to cancer. Mom didn't even understand he had passed away, lost my oldest brother a year after dad, she didn't know this either, if she had it would have broke her heart. I hope I don't live to get old if I get this dreaded disease, mom's db has this too. He is 79 and mom is 89. Keeping you and your mom in my thoughts and prayers. Patty

    Bookmark   March 1, 2006 at 4:06AM
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brena

Sadie, your circumstances sound like mine and yes, I have to vent too..This is the most horrible disease I believe..I seen my Dad die of mesothelioma and it was sad but he only suffered 3 months..I wonder how many months or years Mom will last with dementia and pray I dont live long enough to get this. She does remember me and clutches me when I visit her in the home..She mumbles sentences that dont make scense and I just agree or shake my head to comfort her. She was my best friend and I miss her soooo much..and I too hate this disease!! I leave the home crying, and usually when I get to my house I just scream in pain from seeing her like this, so yeah I know how you feel..It is very hard..Just letting you know there are others like you having a hard time with this..

    Bookmark   March 1, 2006 at 8:02AM
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scotland1

IÂm also in your situation. My mother died of cancer three and a half years ago, and my father was officially diagnosed with AlzheimerÂs a couple of weeks later. HeÂs in assisted living now, and will be moving to the dementia ward soon. Daddy still knows who I am most of the time, and at least knows that he should know me when he doesnÂt. On good days, I can still have conversations of sorts with him, but itÂs a lot of work and I often get a headache afterwards. On really good days, I get glimpses of the man he used to be. That hasnÂt happened in a while. His personality has really changed, he gets psychotic occasionally, and heÂs become really paranoid. ItÂs no fun.

You can always come here to vent! ItÂs enormously helpful to me just to know that others are going through this. Few of my friends or coworkers have any idea what itÂs like. IÂm 38 and have small children, and it seems like most people go through this with their parents when theyÂre older.

    Bookmark   March 1, 2006 at 9:59AM
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lasershow

I feel for you. I lost my mother to a brain tumor a year and a half ago. Although that isn't Alzheimer's, the symptoms and effects are the same. She didn't make sense when she talked (which wasn't often as the disease progressed), she often didn't understand what I was saying (if I said "Are you in pain?" she would look at me blankly, but if I said "Do you have a headache?" she could respond yes or no), she thought people in the TV were real, etc.

It is heartbreaking. Any disease which robs an individual of his/her mind is just a cruel and awful way to end a life. I have no words to make it better for you, only that a lot of us know what you're going through.

I hope that on some level, my mother always knew I was her daughter. She would confuse me sometimes with her (dead) sister, but I hope that somewhere she knew that I was hers and not just some nice lady who visited every day.

Sending you lots of hugs. Come here any time to vent.

    Bookmark   March 1, 2006 at 11:48AM
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gw:jean-2006

We're just beginning this long journey with FIL. He is still at home with MIL, who is wonderful, but it's wearing her down so we know we'll be making a decision soon about where he/they will need to be next. All of you are correct, it is the worst disease. Loss of dignity, loss of the person's identity both make it extremely tough. Prayers for all of the caregivers!!!!!!!

    Bookmark   March 1, 2006 at 2:00PM
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fairegold

Wasn't it on this forum that we were discussing how people think that someone went downhill when moved to an AD ward, and there are a lot of explanations for this observation, and usually the person did not go rapidly downhill. I think that we see them differently before they move into an AD facility, we're trying hard NOT to see them as really that ill. But then the reality of it hits us, and we see them differently. And yes, there can be steep declines, just as with the medications, they only work for so long, and mask more subtle signs of decline, and then all of a sudden, there's a big decline when the drugs no longer help very much.

And then there is the very nature of the diease, where the road is not a smooth one, and sudden declines are not unknown.

I think there are all sorts of 'reasons' why we think we see a sudden decline, but much of it is in the nature of the disease and in the eye of the beholder.

Never ever think that by moving a loved one into an AD care facility that you *caused* the decline, by moviing the person. It really does not work that way.

No, this isn't easy, is it? Bless you all who are struggling, and hugs and prayers, as well.

    Bookmark   March 1, 2006 at 4:56PM
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SadieSadie

THANKS, everyone. It really DOES make a difference to know that other people truly understand, and care. I have a new assistant at work. . . she's quite young, and I every time I mention my mother she says, "Oh, I know. My grandma did that all the time." I want to say, "BUT IT'S MY MOTHER, and SHE'S ONLY 73!!" (Of course, that sounds ancient to her!)

THANKS AGAIN, and hugs to all of you who are living with this awful disease.

    Bookmark   March 1, 2006 at 10:47PM
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sistersunnie

or its "BUT ITS MY HUSBAND and he's ONLY 61!" Which I am finding incredibly difficult. I've nursed my grandfather through his struggle with AD but its so different for me now with my spouse!

    Bookmark   March 3, 2006 at 9:33AM
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scotland1

I agree that sometimes moving to an AD Facility is a symptom of a downturn and not the cause. IMO, though, it can also be a cause. Many people move to an AD facility when theyÂre already experiencing a downturn, and sometimes major change in their lives can cause a downturn. ThereÂs no way to know for sure.

My dad landed in the ICU for a couple of weeks, transitioned to a full-blown nursing home for a couple of months, then moved into an assisted living facility. He experienced a major downturn. Any or all of these things could have contributed. But I do know this: he felt very angry and betrayed by having to give up his old life, his car, his dog and his freedom. He resented the transition from independent adult to child. This kind of stress can, and often does, cause a decline in AlzheimerÂs patients. When my father moves to the dementia ward, he will lose his last bit of freedom, which is so very important to him. I anticipate another decline. But heÂs in a decline right now, and a lot of the fight has gone out of him lately. The move may not impact him much.

I hear yÂall about the whole "my grandmother had AlzheimerÂs" thing. We always think of our grandparents as elderly, but can remember our parents as the young, confident rulers of our universe they once were. A spouseÂs illness is a whole other level entirely. ThereÂs also an enormous difference between being a full-time caregiver, a part-time caregiver like I am, and a visitor (which is what most people luckily are).

Although most of my friends have been extremely supportive and sympathetic, they cannot truly empathize. Most people left the room with their grandparent needed a fresh diaper and turn pale at the mere mention of a colostomy bag. Emotional baggage aside, itÂs very different being responsible for your loved one. WeÂre the ones who make medical and legal decisions on their behalf, get phone calls from the hospital, and manage their finances. ThatÂs why IÂm so deeply appreciative of the people on this forum. YÂall donÂt just say you understand, you really, truly get it.

    Bookmark   March 3, 2006 at 11:27AM
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SadieSadie

YES, it's very different when you need to be responsible. When Dad died of cancer, I told him I didn't know how long Mom could remain in the family home. But I also promised him that with EVERY step of the way, I'd remember that Mom is an intelligent adult, and I'd see that she was treated with dignity and respect. I'm doing my best to live up to that promise, but AD robs dignity! I've spoken to several aides at Mom's assisted living facility, and asked them to please not talk about Mom in front of her. (I also mentioned this problem to the Director, hoping he'd focus on it at an upcoming employee meeting.) I am positive there are times when Mom doesn't understand. But I am even more positive there are times when she DOES - especially inflections, tone, etc. Throughout her entire life, people knew her for her intuition. She was a great reader of people, and she could spot a condescending attitude a mile away.

Sistersunnie, my sister's husband was just diagnosed, at age 63. And as difficult as my mom's AD has been for my sister, it's another issue entirely when it's her MATE. Hugs and prayers for you, and for all the others here at the forum facing such difficult circumstances and decisions every day.

THANKS for making me feel so welcome. It's nice to be so understood. IT HELPS a lot!!

    Bookmark   March 4, 2006 at 4:37PM
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marry

My Mom has AD also. As hard as it is to deal with, knowing that you are not the only one going through all of this does help!

    Bookmark   March 20, 2006 at 9:09AM
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mimi427

Good Morning Everyone:
I just thought I'd add my two cents, and let you know there is one more "out here" that really understands what you are going through.
My mom was diagnosed about three year's ago with Alzheimer's. She lived with me in my home for one year, and is now living with my sister. I spend weekends with her; take her out to dinner, which she loves, and then spend Sundays at my home. Mom does still understand and is able to express herself, but it is so difficult to try to carry on a conversation. I think PB is giving great advice; don't even try to ask questions, or get into conversations that are too involved; they get lost. Keep is simple, but keep talking. My mom responds so well to loving touches, holding hands, and just simple talks.

It is so sad though, so very, very sad, to see what Alzheimer's can do to them. I, too, worry about myself and wonder what will happen to me. I have three sons, one is mine and two step-sons. None of them are care-giving personalities and honestly, I wouldn't want them to have to take on the responsibility. I find myself at times wondering if I really want to live to see my "golden years"...Mimi

    Bookmark   March 20, 2006 at 10:00AM
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