I haven't been on the board lately, trying to hope and pray this all isn't real. But, it is and after my MIL went to the doctor today, and had an evaluation, the Alzheimer's was confirmed. We knew it was dementia, but wanted a new opinion. She put her on Aricept to see how it works for her.
She is still staying with us and has some very bad days but some good also. The hardest part is watching her deteriorate. I hate it, literally hate it. We are going to take it as far as we can before placing her in a home. If I can get through the depressing part and be my best for her, maybe it won't be so bad.
I've been reading the posts and I wish I had some good advice for all of you to help you through your difficult times. I hope I can give back to those of you here what I have taken from this place. I am thankful you all are here and help so many to get through the very difficult times they are going through.
darlay, we are here for you. Did the Dr. say what stage she might be in? Aricept might work well in the beginning. your MIL is living with you? get her affairs done now. POA and assisted living stuff..............sorry, but it's going to be important in the future...
Sorry your fears for confirmed Darla but it is better to know. Then you can set a course, learn all you can, and know better what to expect. Upatnite is right. If you have not already done so make sure you have the durable POA and medical POA/living will/medical directive in order. Also have someone's name on all her accounts. Otherwise dealing with her affairs is almost impossible.
There will be good days and bad days. Once you find techniques for dealing with the bad times and get some experience under your belt I think it gets a little easier. Then the disease will throw you a curve ball and you have to come up with something new.
I understand you desire to keep her at home for as long as possible.... just know when you have reached your limit. Don't let it affect your health, marriage, or well being. Also, get yourself some help. Find a daycare she can go to a few days a week or someone that can come in several times a week to give you a break. The sooner you start this the better it will be for you and your MIL. You have to have a break. You might also investigate the availability of short term respit care so you and your hubby can get away from time to time. Do not tie yourself to her and the house 24/7.
Also be watchful of wandering. They are crafty in slipping away. You definitely need an alarm system to warn you when she leaves the house, even during the day, before she starts wandering. It is better to be safe than sorry.
You give back by just being here. I am sure you will have your own experiences to share. We are all here for each other. Just having you here is support for the rest of us So grab a stack of towels and hang on. We have the other end...
Thanks for the advice. I know her affairs are not all in order. I keep pushing for it to be done. There is no POA, no living will, no arrangements made. I know how important it is to take care of all this, it causes me great anxiety. I know if it's not done, we are going to have a mess, at some point.
My MIL is on dialysis and the SMTS bus comes and picks her up on MWF, so I get a break then, and do my errands, take a breather. I don't know what stage she is in, I guess the doctor didn't say, only that she had seen worse. My husband didn't say. I will find out next appointment. From what I have read, it seemed that she was in about stage 5 to me. She still can do things for herself, but is having increasingly difficulty figuring it out. I wait, to see if she can do it herself, or rather, WILL do it herself and then I jump in if she can't or doesn't. Everyday is different. I am thankful for the days when she can still do things for herself. She was always so very independent.
Welcome...and I'm sorry you needed to find us. But you are welcome here any time.
Now, I hate to nag, but I'm going to and this is for your MIL's own good. You need to tell your hubby that he needs to get a durable POA and a medical POA in order NOW. Plus he needs to get on his mothers bank accounts NOW. The power of attorneys need to be completed while she is still "in her right mind" if you get my drift. IF she isn't cognizant, an attorney won't do the paperwork, and then she will be at the mercy of the state..and I don't think that you want your MIL to fall into that category. So please have your hubby get this taken care of sooner rather than later. This is something that can't be stressed enough, and it is for your own good. No matter what you think of her-it needs to be done....lecture done, climbing off my soap box.
You will need to also start to look for AL or NH for your MIL. IT is never too early to do this. Time flies by and your mil may get too bad sooner than you would like, so you may want to be prepared in advance.
Please come back often and post. We have all been where you are. I lost my mother a year ago to this dreaded disease. My dad died 5 weeks before Mom to an aneurism, and he had vascular dementia also. So I've been there...
Hi Darla, and welcome to the board! (I love your name!)
I'm kinda where you're at. I've had my MIL with me now for about 3 1/2 months. Like you said, everyday is different. Some days are no big deal. Some days make me want to scream. Today, she has no idea that she was up at 3 am this morning, having heard Christmas music (a dream, apparently) and decided it must be time to get up and work on her puzzle. She woke the entire household, or more accurately, I did, because she couldn't/wouldn't hear me talking to her and trying to get her back to bed. When I got her upstairs, she wanted to have a long conversation. She went back to sleep and the rest of us didn't.
We had her assessed and she's exactly where I thought, stage 6 of Alz. This board has helped me so much to understand what's going on and how to handle it. Every now and then, I feel like I have something worthwhile to contribute, too, but mostly I soak in the good advice of the veterans here.
Like others have said, you MUST get powers of attorney straight right away. Get your name or your husband's name on her bank account and make copies of the power of attorney. You'll need them as you deal with things.
Keep reading. You'll learn a lot here! And I wish you the best. I know so well what you're going through!
My husband is on my MIL bank account. I will keep expressing the need to get POA done...soon. Maybe since the doctor's appointment and the confirmation of her condition, it will be easier to get the things taken care of that need to be taken care of NOW.
As far as the AL and NH go, I know we need to look into that also. I think my MIL is under the assumption that we will be able to care for her up until the last minute. Yesterday, the doctor told her she was prescribing Aricept so that she could stay with her family a little longer. My husband said that my MIL didn't understand what she meant by that. My MIL has no idea what this disease will do to her and how unsafe and difficult it may become, at some point, for her to continue living with us. But, I guess trying to explain all that now is pretty useless. I don't think she would understand, probably just think awful things about us. I guess we will take it one day at a time.
Hon, one day at a time is all you can wish for. I lost my mother to this disease...a year ago all saints day. My father died 5 weeks earlier to an aneurism, but he also had vasucular dimentia. So I have been down this rocky road. I have already stumbled on those rocks that you see cropping up in front of you. They will grab you and trip you up when you least expect it.
If there is one thing that I can convince you to do it is to get that POA and to do it NOW. Your ability to deal with doctors down the road when she is in AL and NH will depend on you having that piece of paper. THe sooner you get it the safer she is going to be. If her doctor is talking to you now, you are lucky, because he is violating HIPPA laws. If you have to change her doctors, they will ask to see your POA, so if you are going to need to see any other doctors......get my drift?
Keeping her at home will be difficult. Aricipt will only delay her progression. It will not stop the disease. There is nothing that will do that. Be aware that in some patients there are marked side effects to the drug. But it is the only thing on the market except Namenda that is available to stop the steady decline of the disease. You will need all the patience that you can find. You will need to look for humor in every situation that you can find. It will be the only way that you will be able to make it through some days. It will be that or you will take to either tearing your hair out or the bottle or sitting in the corner and whimpering..and then we won't know who has the issues!
Come back and post often. We have heard it all..or most everything and we can find a good chuckle or two..Welcome to the group. Here's your towel, you'll need it soon enough. Planet Alzheimers can be a scary place some days....
Most of us who've been dealing a long time with this disease sure can sit back and remember too well the unknown challenges that lie before us! It's just such a darn scary feeling to see what is happening right there in front of us and feeling like there's nothing we can do!
Darla...please keep posting and asking questions! Share what's happening...often others will see similiarities in their own loved ones.....Pam
ibake&pray, I am sorry for the loss of your parents. That is a hard thing to go through. My mother passed away from mesothelioma in 2001. The suffering is the worst.
I talked to my husband when he came home and we discussed what could happen if we didn't have POA. We are getting on that right away. Thanks to the info you all provided. I was not aware of what could happen, exactly if you didn't have POA. I just knew you needed to have one. Now I know. We don't want any of that to happen.
petal*pusher thanks for letting me know that there are so many of you out there that have been through this and can help me. I don't feel so isolated and alone. It's good to know someone knows what I am going through and what might be ahead for us.
Get both the durable and the medical POA. you need both of them. Don't let a lawyer tell you any different. Better safe than sorry. Once you have them you can breath easier. And as fast as you MIL can fail it's a necessity in your case. That and a LARGE bottle of wine should get you through the first week or two...
I miss my parents more than words can describe. I am/was an only child so this past year has been particularily hard. We have a 1 year old grand son who is named after my father. He is such a delight and I think how my father would have enjoyed watching him grow up. It's so sad and hard. My mother loved babies and little children. The sun rose and set in my two sons for my parents and my boys have been hit hard by this. My oldest is in the Navy-he is a professional trumpet player-and he played taps at his grandfathers funeral. That was a hard thing for me to hear-and for my son to do.
You are going to have a rough road ahead of you. Having your MIL at home with you will test your marriage and put strains on your family life such as you have never imagined. You will find stress levels incressing beyond your worse expectations. You need to prepare yourself and your family and husband for this. Make sure that you plan time for yourself. You need to have time for you. If you haven't found a day care center for your MIL yet, start looking for one. You will need to have time for her to be away from the house so that you will have a break. You cannot do this 24/7 and still remain sane and stable. Start to look around your house at things that could be a hazzard to her. Throw rugs, little knick-knacks, extention cords, small end tables. Do the doors have locks high enough up that she can't get to them? can you secure the windows so she can't open them? Do you have the cupboards locked where the cleaning supplies are? Are sharp knives and scissors put away where she can't get them or in locked cabinets? You need to start thinking like she is a toddler again. I know that this may sound extreme, but soon she will be this bad.
I'm sorry to burden you this way, but an ounce of prevention(as my mother used to tell me) is worth a pound of cure.....
welcome to the planet. Here's your towel. Hang on tight. We have hold of the other end and we'll help you through the tough parts....and BTW the towels only come in purple and red! royal colors...
Last edited by ibake&pray; 01-30-2009 at 08:00 PM.
Also, although those online places where you can do wills, POA's, etc. are a lot cheaper, they only let you appoint one person. If you use a lawyer, you can both be put on as joint Powers of Attorneys. We did this because I'm not a blood relative, but I'm the primary caregiver. I'm the one who takes MIL to all doctor appts, banks, etc., so it was actually pretty important to have me on there, too. In fact, my hubby doesn't really even need to be on there!
I guess that depends on the state and why it is best to check with a lawyer. Here in NC you can only have a single POA appointee. You can appoint a secondary POA appointee but that is only effective if the first appointment can not fulfill his/her duties. So there is only a single person appointed at a time. Or so accourding to our lawyer
You are wise to take care of the legal aspects now ... we took my husband's folks and drew up durable/medical POA papers as soon as his mom was diagnosed. My husband is an only child and his parents were grateful for our willingness to help care for them, so were were fortunate and it was very simple. But if we had waited until his mother deteriorated much further, it would have been more complicated.
We took care of them at home for as long as possible, and even though it was the hardest work I've ever done, it was a labor of love and I don't regret it. My dear MIL was started on Aricept right after her diagnosis, and she did really well on it and it probably gave us 3 or 4 more years with her in fairly good shape. This is in line with what others have told me about Arcipet. But once we hit about 5 years after her diagnosis, you could almost see it stop working and the progression of the disease started moving more rapidly ... my husband and I were just beginning to talk about future nursing home placement for her when she had a massive stroke right in front of us ... she survived it, but she lost all use of her right side and has needed nursing home care since them.
We cared for my wonderful FIL for another year until he was diagnosed with colon cancer a year ago and underwent surgery/colostomy and the surgery weakened him greatly and he hasn't been able to walk on his own, so at that point we opted to have him placed in the same facility where his wife is. We are so blessed because they take really good care of both of them and we are just a 10 minute drive away. I believe they have both done better being able to see each other every day.
Through all this, having the POA has been very important ... once you have that, you are set to advocate for them and their care. It will give you great piece of mind to have it done. As you begin this journey, I will just agree with what the other wise folks have shared with you ... take one day at a time and make sure you have some breaks in caregiving so you don't get burned out. And keep an open dialogue with your husband about when it might be time to bring in help or transition her to AL/NH care.
The decision to place both my in-laws in a nursing home was pretty much dictated by their medical condition, so I'm not sure how I would have made the choice if we were just dealing with my MIL's Alzheimer's ... I felt in my heart like I was giving up on both of them as it was, but my head told me that logically, the NH was better equipped to care for them and I couldn't keep going like I was ... we have an 8 year old daughter and I didn't want her to miss out on anything because of my obligations to care for them, but I also have to say it's been a blessing to see the compassion and patience my daughter has gained by being a part of our family during this time. You just do the best you can and that's all you can do ... I'm trying to make my own peace with that.