Experience with Alzheimer's?

Does anyone have experience with family with Alzheimer's and particularly if you have kids? My nana has early stage Alzheimer's and no longer has any short term memory at all which progressed fairly rapidly. She is in otherwise perfect health so she'll be around for a while but I am consumed by the thought of knowing sometime the near future she won't know who I am and I'm terrified and heartbroken Knowing that day is coming. I just cry constantly about it. I also have two kids an 8 year old who I can at least explain it to but a 4 year old daughter who loves her more than life and spends every second she can with her. They are inseparable. I don't know how I'm going to tell her one day soon that nana still loves her very much but doesn't recognize her anymore. I can't bear it and she won't understand. Can anyone share their experience, how it progressed, how you dealt once they were here but gone and how you explained it to small children to whom this person was the world?

Experience with Alzheimer's?

This disease is worse for the family. We went through it with my grandma . It's a hit or miss with the memory. One day she knew us, the next she was asking my husband "when are you". We got a lot of video of her on her good days. We would tell ds (4@the time) that she was having a bad day and was tired. Have pictures hung up and labeled with the person's name on them. That helped on bad days. Play music for her. Whatever she likes, they say it helps them with memory. We would play the Lundy and she would.start.rocking her feet around like she was dancing again good luck, it's a supershitty disease.

Re: Experience with Alzheimer's?

It's a horrible disease and I'm sorry for you and your family that you have to watch your loved one go through this. From my experience, my grandma progressed what some would say rather quickly. On bad days, she has no idea who I am. She thinks my daughter is me and that she is my mothers child. The revert back to different times in there life. She has had it for several years and it's actually getting more severe in her case bc she is having trouble remembering to eat and how to eat. My mother tried for several years to take care of her but it got to be a dangerous situation because she was sneaking out of the house and almost burnt it down on 2 different occasions. My mother even tried a home health aide but that didn't work for us either so now she is in the dementia wing of the Bristol in sayville. Oddly enough, more recently she has been having some really good days and when she sees me she knows who I am. She is shocked to shit that I have 2 kids now, lol. She was still fairly with it when I had my first dd but she can't remember her so it's always a shock that I have an almost 4 year old.

Re: Experience with Alzheimer's?

We too went through it with my grandma. She was like a light switch. For the last 4-5 years of her life she didn't remember anything short term.
My mom called her one day and was talking about me being pregnant and she asked when I was going to be done having kids bc I had 5. I was pregnant with my 1st at the time.

She also didn't remember who anyone was (her family she didn't see often) but to be honest we just made the best of it. She once tried escaping her house when my mom was there with her bc she told her she wasn't staying there with her.

There were a few times she walked out of the house too.

Towards the end end she couldn't even form sentences. She lived out of state and the last day we were there visiting (which was the last time I saw her) She looked at my daughter (who was 4) and said look how fat you are. She meant cute but the fact she said it all together was big.

It's such a sucky disease and so sad to watch someone go through it. Like pp said, it's harder on the family.

Last night as I was driving home wiht my kids my dd just blurted out crying bc she missed my grandma. It's sad for little kids too.

Re: Experience with Alzheimer's?

My grandmother had Alzheimers. She passed in April 2014.

For many years it wasn't a problem, her short term memory wasn't terrible and her long term memory was sharp.

Then in late 2013/early 2014 we noticed an immediate shift. Her short term memory vanished. She began sundowning (anger/anxiety/confusion during the late afternoon and early evening), and became increasingly unpredictable, aggressive, and uncontrollable. She lived with my parents for 26 years and we agreed, as a family, to keep her home with us as long as possible. We did look into nursing homes, but between waiting lists and some outright refusing her due to her behavior and mental capacity we ended up bringing a nurse in to help. By February/March of 2014 her care was unmanageable and more than any one of us, or all of us combined, could really handle. She would make us sit with her for hours, she seemingly had no limit of energy and would never sleep. She would scream, cry and bang on doors. All of her doctors said it was just end stage Alzheimer's and they intended to keep her calm via medication, which did not work, nor were we comfortable medicating her to the point where she was bedridden and near-comatose. As it was, she was losing control of her faculties and we had to feed her, bathe her, change her, etc. And for a tiny woman who was 75lbs, she was a fighter.

As March continued, she got worse and worse. She ended up in the hospital for a week and when we came home we had her room outfitted with a hospital bed, wheelchair, etc. She needed round the clock care and was aggressive and violent at times. She thought the cat was a lion, we were all strangers, she had no idea of where she was...it was like her brain was short circuiting and her long term memory became her short term memory and you could see her struggle to understand, speak and interact with us. My 5 year old nephew would lay with her a lot, which seemed to calm her. I had a 6 month old who she didn't recognize, but always asked about "the baby" even if we were not there. She had moments of clarity and lucidity at times where she would seem to have a grasp on her situation and say how sorry she was, how scared she was, and it was heartbreaking. Day by day she was getting weaker until she was confined to her bed.

One day in early April the nurse told us the end was rapidly approaching and we arranged for hospice care. She went into the hospice in Northport and it was the best experience possible. They were so caring, so attentive, to her and us despite knowing that she would soon pass. I just can't express how wonderful they were. We had 24 hour access and the kids were allowed to come too. She was basically comatose at that point, but they monitored her and we played her favorite music and just stayed next to her and told her we loved her.

And when she passed we were so grateful that her suffering was over and that she was at peace. Because she was in a living hell and there was nothing we could do.

And I say all this to you not to scare you, but to tell you that I've been there and I understand how you feel. I'm bawling even as I write this...and to also let you know that it may be years before she ever gets to the point where she doesn't recognize you or your children. With my nephew, when she passed, we just explained to him that Meme was in "the doctor house" (his word for the hospital/hospice") and that she would always be in his heart and memories and that she loved him. Months later, it seemed he recognized that she was no longer at my parents house, and he said to us, "I see Meme in the sun, it was a beautiful time" and that was it. And we always make sure to tell him and my son stories of their Meme so they will always know how much she loved them.

If you ever need to talk, please do not hesitate to FM me. No one else I knew had been through this and it was very isolating.

Re: Experience with Alzheimer's?

My grandmother passed away in 2009 and had Alzheimer's. The last time I saw her she was talking to me about my DS baptism which was happening a week later, she adored my DS and he was really the only one she remembered always. She did know who I was, as well as my DH, but was saying things about other people that weren't true, almost going back in time. I'll be honest, I hadn't realized how bad it was and didn't realize she would die so fast, so I have a lot of guilt about her passing, I was about 22 at the time.

I feel that the nursing home that she was put into wasn't caring for her properly, but she was put in there since she fell one day and broke her hip. It's all very sad, and I wish her kids, including my mother, would have stepped up to the plate and brought her into one of their homes.

I miss her an awful lot, and wish my kids got to know her.

Re: Experience with Alzheimer's?

Message edited 11/21/2015 3:39:19 PM.

Experience with Alzheimer's?

My grandfather had it - my brother was about 8 when he started having lots of trouble - he helped my grandmother out with him a lot- it is a tough disease but right now you should see if your grandma has a living will - while the disease can eventually kill them a lot of times it is other things and the right to refuse antibiotics can be an important one when they are bedridden and get pneumonia and are not there anymore. that is how my grandfather passed after being in a nursing home for a few years and not knowing anyone anymore and barely functioning he got pneumonia and the family said no to antibiotics to treat. It was an easier way to pass

Re: Experience with Alzheimer's?

This is just a horrifying disease - my aunt is suffering from it and is now in a nursing home. She was 55 when she started showing signs, she is now 64 and it is full blown. She does not recognize anyone, cannot speak, cannot walk, cannot eat on her own etc. It is torturous on all of us.

This is my mom's sister, they also have a brother. We all grew up within blocks of one another and are very close. My aunt was always the fun aunt, the aunt that did crafts with us, that let us stay up until midnight for sleepovers, the aunt that literally let us sleep over when ever we wanted to etc. She was the favorite aunt for ALL of us.

She started showing signs right after her oldest daughter died of an asthma attack on my aunts birthday - she was 27 The doctors say that it was too much for her to handle and her body and brain played right into the stress.

I would be honest with your child so to prepare them. I'm sure there are things online that you can find to help explain it further. One of my other cousins is a Doctor, and he said that they treatments that are being discovered are very promising, but it will be years before any of us see them used.

I go and visit my aunt in the nursing home and I am just a complete mess when I am there. It is hard to see them immobile with this blank look on their face, not being able to communicate. The worse part is that she is otherwise healthy, so it is a slow torturous life for all. Our hearts break even more for my uncle and cousin, they already lost so much and now this.

Re: Experience with Alzheimer's?

Im so sorry you all have gone through this as well. I don't wish this on anyone. I appreciate you all sharing your stories and all the good advice.

Experience with Alzheimer's?

I am so very sorry. My mother has Alzheimer's and was diagnosed less than 2 years ago. Her progression has been very quick but for most it's a long, slow decline. My DS is 3 1/2 so close to your daughter's age. He doesn't know she is sick and I have decided not to tell him until he asks or seems to notice something "different" about her. She is in assisted living (memory care) but he's too young to understand. It might be harder in your circumstance because you have an older child as well. Try looking for some books to help explain to the kids, I know Amazon has several (one by Maria Shriver that's supposed to be excellent). It's a terrible disease and I am so sorry your family is going through this as well. Best wishes to you.