Alzheimer's Experience?

[carfreemama]

My 88-year-old mother was just diagnosed yesterday with early-stage Alzheimer disease. She is remarkably healthy and sharp for her age..no diabetes, no heart disease, nothing. She lives alone in an apartment 1000 miles away. We are very close. She will be coming down here for Christmas and we will be looking at retirement/assisted living centres. She is considering moving down here to be close to my family, which is what I want so much. I am her only reliable family support where she is and though she's very social, the majority of her close friends and other family have died.

When I spoke to her yesterday, she said she had a lot of hope for the medication-Aricept or its equivalent-but her doctor, whom I have met and really like, said it only helps 1 in 14 patients. So while I am not going to take her hope away, I don't think we can rely on that. Ever the survivor, she said she intended to work on her memory to keep it sharp.

Has anyone else experienced this illness with a loved one? What can I expect? Does it always progress? What will she be like by this time next year? How can I help her?

Thanks.

[Shantimama]

My mother was diagnosed with Alzheimer's when she was in her early 70's.

Drugs like Aricept can help but they are not a cure. They are designed to slow down the progression of the disease but they cannot stop the progression altogether. Her memory and judgement will still deteriorate but not as quickly as they would without the medication. 

It is impossible to predict where things will be at one year from now but yes, this disease always progresses. It does not progress at the same rate in every individual. Other things can happen that affect health and cognitive ability or decline. It also affects different parts of the brain at different times in different people. My mother lost her ability to understand or deal with anything to do with numbers (money, time, math, counting, spacial abilities) very early on but was able to read and speak for a long time. I know other people who have lost the ability to read and write early on but could still handle numbers for a long time. 

If she wants to live closer to you then this is a perfect time to make that happen. Change will become harder and harder for her to handle. Being near you and in some sort of assisted living facility sounds like a perfect arrangement.

One of the most important things to do while she is still as she is now is to make sure she has all of her power of attorney papers in order. With Alzheimer's at some point she will no longer be able to manage her own money or decisions about her property and this is the time for her to designate someone to do those things for her when she is no longer capable. She will also need someone to make decisions regarding her health care. It is extremely important to have the proper legal documentation in place for those two things as soon as possible. Having a conversation about her wishes about her end of life care is important to so that her designated substitute decision maker knows what she wants for herself.

Taking care of yourself is so important when a family member has dementia. I supported my mother for eight years after her Alzheimer's diagnosis before she died a little over a year ago. I would be happy to answer questions you have as they come up for you.

[carfreemama]

Thank you so much Shantimama! I'm so sorry you lost your mother, but I'm glad you were able to be there for her.

Her power of attorney is all taken care of for health and finances. It's me. We also have a provision for someone to act on my behalf locally for health, because it will probably take me a good 24 hours to get there in emergency; maybe longer.

I contacted the Nova Scotia Alzheimer Society and they have fantastic 6 week caregiver education series that runs in September and October. I'm signed up! And they put me in touch with Continuing Care so I can find out about the best places to check out for Mom. She's coming down for Christmas and we're going to look at places together then. She can stay with us in our house for as long as she wants, but I know she doesn't want to live with us long-term. The place we're looking at is only 5 blocks away, though.

I'm just holding my breath, hoping she will decide to move down here. I have another sister out West, but she's not stable in any way and hasn't been down to visit in 15 years. I'm largely on my own with this. There are lots of people who love her, but not many who can really take on her needs on a daily basis where she is now. I don't want to push so hard I push her away, but I'm still trying to get past her "I don't want to be a burden" fears. I really have a gut feeling she will come, though!

[Shantimama]

Oh good - another Canadian! 

I learned that it was really important to go with things quickly when she made decisions and to phrase things very positively. Early on there were days when her thinking was clear and then the next day could be very foggy. I had to learn to hold on to her decisions and memories for her when she was not able and how to do it in a way that wasn't demeaning to her. My mom was diagnosed when my children were very young and I found that many of the same communication styles worked.

One of the hardest things with dementia is having to learn a new way to communicate someone you have known for a very long time. The 'rules' all change and it is very stressful at times.

Maybe talking about how happy you will be to have her close by so you can see more of her and spend more time with her will ease her fears. Even if the impetus for moving her closer is knowing that her needs will increase, emphasizing how much it will help you instead of just being all about her needs might make it much easier for her to come.

[carfreemama]

Yes, I'm a Maritimer, Shantimama!

The fact is, it WILL help me to have her closer to me. I WANT her, with  or without dementia. I have tried to make that very clear to her, that our intention is to have her join our family and share her life with us. I've told her that I need her as much as she needs me. But it's good to be reminded of that, because she is so nurturing. She is, like so many elderly women, used to caring for everyone else her whole life. She has buried two husbands, a sister, her oldest daughter and countless friends and she has cared for the daily needs of all of them to the end. My daughter is 7 and they get along very well together. I've told her over and over that the only burden I have is not being able to see her often enough. My big concern right now is the communication thing. We have always used the phone to maintain our relationship between twice-yearly visits; we are 1000 miles apart. I talk to her a couple of times a week, but the conversations can easily go 1-2 hours and I love them. She does, too. But if that becomes difficult for her, we will have to adjust. Hopefully she will be here by then.

Thank you for the valuable insight about holding on to her decisions. I have already seen this and that understanding will be important in coming to a decision about where she wants to live. and it IS like talking to my daughter; I want to respect her choices and decisions, but either she has trouble making them or they change. I want to be careful not to obsess about this new diagnosis, too. Her biggest wish is for me and my sister to visit with our kids and with her; which will mean us going to the west coast, because my sister will not meet us in the middle. I want to honour this request and we were going to go out next summer. Now I have suggested we go this fall; but I think I scared Mom, because she asked me if I was afraid she would go downhill that fast. Oops. And I guess I was afraid, because I'd feel awful if something happened and we couldn't go. You've been so helpful, I really appreciate your time and your kindness.

Nancy.

[rcr]

Hi Car Free:

My mom was diagnosed at the age of 55 with Alzheimer's. She is now 68. Sorry you are dealing with this horrible disease. From reading you post, I immediately thought that it is really, really important to get your grandma to move near you. To make a very long story short: My mom was living in the home that she has always lived in when she was diagnosed, and had very little stable support system around her. My sister, who is more than useless, lived a mile away from her, and my father (they divorced 20 years before she was diagnosed) was still in contact with her. He is a pretty shady guy who likes to take advantage of people. I tried to get her to move near me (1000 miles away), but had no success because she simply did not want to leave her home (a reasonable position, except that she had Alzheimer's). My father ended up loosing his job and was living with her on a temporary basis shortly before she got Alzheimer's (not in a romantic way - she let him live there because otherwise he would be homeless). Well, when she got Alzheimer's, he ended up staying there to "take care of her." I was somewhat comforted by the fact that my sister, although useless to me, does and did love my mom and so I thought that she could be able to keep my father in check. I was wrong. I was only able to visit about 3 times a year (very expensive flight), but over the course of almost 10 years I saw her living situation get worse and worse, and her mental state deteriorate (worse than what it would have been had she had good care). For about a year before I got her down to live by me, she was so paranoid that my father and sister were stealing her money (she ended up being right), that she was calling crying nearly every day. Nonetheless, she gave my father power of attorney and re-wrote her will to leave him and my sister all her money and cut me out. My father constantly threatened her with things like "if I was not living here than you would be in a nursing home" She was terrified of that. I ended up fighting a legal battle to get her, and I won. She lost almost $40,000 over the 10 years or so that my father was living with her. I managed to get power of attorney, and a few weeks after I took control of her finances my father skipped town and my sister hasn't spoken to her since. When I finally got my father out of her life and cleaned out her house, her sheets had not been changed in over a year (and she was incontinent), she rarely took her meds, and there were mice so plentiful in her house that they were eating through her toothpaste tube in the bathroom drawer. I had to spend $10,000 to get the house habitable enough to rent out. Mold was everywhere. Fortunately, her sister and I worked together on everything, so I was not alone (we have no other family)

Anyway, not that that kind of scenario would happen to most families, but if you are in fact her only reliable support system, you need to get her to move near you. It is very very important. She could sign away power of attorney to anybody at any minute - even the barber or the garbage man, and  you being so far away would be powerless. Alzheimers is a nasty disease. It not only affects your memory but everything else that the brain controls, which is everything. My mom went from being a kind a sweet gently person to being (on occasion) incredible violent and scary at times. Your grandma will not be able to take care of herself, but people with Alzheimer's can easily fool family members who are far away into thinking that things are ok. It will be much easier to move her now than when things progress.

I would also echo Shanti about the importance of getting her legal paperwork in order. However, keep in mind that she can change power of attorney at any moment without your knowledge. Also, Medicaid has a 7-year lookback in most states, so if she has a lot of money you may have time to protect some of her assets now. If she runs out of money and medicaid kicks in they don't even pay for extras like depends, soap, or shampoo. It usually also doesn't pay for assisted living, so you need to consider if she has enough money to live in assisted living and not end up in a nursing home before she is ready (which medicaid will pay for). My mom has $60,000 left, and is showing no signs of dieing anytime soon. I worry every day that she will run out of money before she is ready for a nursing home. Financially, Alzheimer's takes a big toll and is incredibly stressful.

Things are really good for my mom now. She is in about stage 7, so she no longer knows that she has Alzheimer's and is re-living her happiest days (she is in college most of the time). The first few years were the worse because she knew what she had and how she would eventually become. She was young though, I suppose it may be different with somebody in their 80s. I see her every day and my 3-year old has a wonderful relationship with her. So, things are good now, but they were really hard at first, and had I been able to get her to move with me as earlier, a lot of the pain could have been avoided.

Oh, and Aricept may delay it. I don't know if it did for my mom. My mom is on a lot of drugs (seriquel and halidol being the most important).

Good luck. You are a wonderful person for wanting to help her. It is a long, long road.

[rcr]

Oh, wait... your're Canadian... Ignore that medicaid stuff - that is in the U.S.

[carfreemama]

Thank you so much, rcr. Your situation echos my worst fears about my own family, including the sister; though she is even further away from Mom than I am. She is actually my mother, though I know it's confusing since she's 88! I'm 43 and she had me when she was 45. So the sister I was closest to was 20 years older than me and died of Huntington's 2 years ago. That was awful, too. At least with that, we had different fathers; because Huntington's is very genetic.

I do have all power of attorney for health and finance. One good thing is her banking advisor is amazing. She calls me whenever she thinks something might be off with Mom's money, because she has a lot of hands in her pot (and she's a WIDOW)! She was actually the one who first urged me to get Mom to go get cognitive testing. One thing this banker did was convince Mom to make convert to joint accounts with me cosigning. It was for exactly the reasons you have stated--she can change her power of attorney more easily than she can change her account status. It gives me a bit of time to protect her and intervene, if necessary.

There's also something called the Smiles program here, which is through home nursing that comes in and assesses need and kind of keeps track of Alzheimer patients. So far, I feel like people who actually do have her best interests at heart are keeping me in the loop. But it's the day-to-day visiting, caring and inclusion that I just don't think anyone else can provide in the city/province she's in. I work from home all day. I'm just plain around a lot and she would be surrounded by love and company here.

Thanks again. I can't imagine what you've been through and how hard you fought for your mother. I am prepared to do the same.

[rcr]

Glad to hear you have the financial stuff worked out - it sounds a little safer than the situation my mom was in. I wish I had some concrete advice for how to convince her to move near you, because that really is what needs to happen. If she is at all like my mom, she must be terrified (who wouldn't be when first diagnosed) - my mom was probably most terrified of loosing her independence. Maybe if you somehow tried to convince your mom (sorry I kept calling her grandmother) that moving near you would actually increase her independence would help - by keeping her out of a nursing home or a unit for Alzheimer's patients. You know, "if you leave near me  you will be able to stay as independent as you are now because you will have be to look our for you" Also, maybe an extended visit could convince her (planned out so that everything is perfect). when taken out of their own environment that they are comfortable with, they can get very confused and act very differently, so be prepared for that (even in the early stages).

when I finally did move mom, what worked really well was having my husband drive her down to our house, while I quickly flew up to her house and packed up the necessities (she would never have been able to handle packing up the house). I  did it so fast that I even left food in the fridge because I had 3 days before she was going to arrive in my house (they drove, I flew), so when she got to my house, all her favorite things were there when she got there. We also considered having her visit her sister while I made the move for her. People with Alzheimer's can become very possessive of material things, which was true of my mom.