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scorptired 02-03-2012 08:46 PM

I'm new and exhausted...
My husband (63) was diagnosed with Alzheimer's recently. He has been forgetting a lot of things, not recognizing people he has known for years, gets agitated and throws things on the ground or floor (normally a very easy going man), still has a driver's license but, I forbid him from driving. I'm just exhausted because we have a business that needs to be run and I've had to take over his role in the business, take care of our daily lives, raise our teenage daughter, and fend off the scam artists who have tried to profit on his inability to remember things. I'm fumbling through this whole process and am thankful for this site.

jagsmu 02-03-2012 09:15 PM

Re: I'm new and exhausted...
welcome, a big hug to you, there are many on here that are going through, have gone through what you are dealing with, ask your questions, get some hugs, lets us help you and support you,

hugs judy

Gabriel 02-03-2012 09:24 PM

Re: I'm new and exhausted...
I am so sorry you have to deal with all this but am glad you found us. Dementia does throw your world into chaos! If there was one piece of advice I would give you today it would be... please get some help with something. Your teenage daughter definitely needs you. Perhaps a trusted person to help with the business or keep an eye on hubby so you can do the other things you need to do. Prioritize. Decide what has to be done, what needs to be done but can wait, and what can be left out.

Be sure that you have all necessary legal paper work done. This is a priority while he can still understand what he is signing. You need a durable power of attorney for person and probably the business. You will need to be sure that your name is on everything! Be sure to get the medical power of attorney, living will, or medical directive done. It would be worth it to consult with an attorney familiar with elder law and business law to protect yourself. There will be a time when he can not participate and you need the legal power to continue solo.

Once that paperwork is done, you may want to get a diagnosis. It is nice to know where you are and what to expect. You also need to rule out any other possible causes.

The Alzheimer's Association can tell you if there is a driving evaluation center near you. They not only test the physical ability to drive but the mental awareness and cognition needed to drive. If they find him safe to drive so be it. If they don't then they are the bad guy and not you :)

Beyond that, hang on for a bumpy ride. It is not an easy journey but it is doable... and know we are all here to support, lift up, and share experiences. Take what you receive, decide what you can use, and throw out the rest. Know each situation is different. What works for one may not work for everybody.

But foremost :) Breath once in a while and take care of yourself. If you get sick who would do all you do?

Again, welcome :) Hope to hear more from you soon!!!

Love, Deb

scorptired 02-04-2012 09:01 AM

Re: I'm new and exhausted...
Thank you! He signed full Power of Attorney to me a couple of months ago. I don't know if there's other things that I need done. Thank you for understanding and it's nice having this board.

Gabriel 02-04-2012 10:33 AM

Re: I'm new and exhausted...
Just be sure the full power of attorney in your state includes medical power of attorney. They are the same in some states and different in others. A quick call to your lawyer that drew up the full power of attorney can tell you. I found it helpful to have my name on Mom and Dad's checking account. That way I could do what needed to be done there without bothering with the POA. Also be sure that your name has been added to the HIPPA list at each of his doctor's and medical institutions. This will allow his doctors to talk to YOU! HIPPA laws are just annoying when it comes to dementia. When a medical form ask who the doctor can talk to... make sure your name is first!

As for any federal payment (social security, medicare, medicaid, military retirement, etc) POA's are not effective. You will need to go to the social security office and have yourself appointed as his payee. This will take a letter of inability from his doctor. This is not the same as incompetence! It is just a letter from his doctor that he is unable to deal with his on finances. I found it a relatively simple process.

Also learn all you can about the disease and the services available in your area. Knowledge is power. Even if you don't think you need them now, check out local adult care facilities for daycare, respite, and long term care. It is much better to know what is available and which ones you prefer before the moment of crisis arises that you have to do something. A little preparation saves a lot of chaos in this disease.

Just a comment on the agitation. This and other a-typical behaviors are a part of the disease but should not be allowed to continue unchecked. There are techniques for dealing with agitation. Finding the source and avoiding those situations does help. Never argue with someone that has dementia no matter how wrong you think they are. To them their reality is REAL. Validate their emotions because those are also real and then try to find the triggers and remove them. If necessary there are medications that the doctor can prescribe to help with the agitation. It may take several tries to get the right medication that will help your husband. I am not a fan of Xanax or Ativan but I am sure those will probably be the first the doctor will try. They are quick acting but do not last long and do not resolve the problem. They are nothing more than a bandaid that tends to put you on a roller coaster ride of ups and downs. Their sedative effect can also be a problem. The A-typical anti psychotics are helpful but some doctor's tend to be resistant to prescribe them to the elderly. There is a warning of slightly increased risk of cardiovascular events with these meds. But when you weigh the benefits (behavioral control) to the side effects (slight risk of cardiovascular events), there will come a time when the benefits may far outweigh the risk. If behavior does become a problem please find a good Geriatric Psychiatrist that specializes in dementia behavior. Not just an everyday general psych but a true specialist. That was when I found relief for Mom's distress. Also know that as bad as these behaviors are for you to deal with...they are much worse for the person experiencing them. Treating emotional well being should be as important as treating physical well being.

I do wish you luck, ask any questions you might have, vent when you need to, and know we are all on this journey together :)

Love, deb

ninamarc 02-04-2012 11:18 AM

Re: I'm new and exhausted...
You may want him to write a living will or health proxy to you as POA for medical reason.
This way, you can decide for him what to do when he needs the nursing home and etc. He will also write down the directive so you know if he wants artificial tubes or that kind of stuff (tube feeding and etc.)

The POA for finances is a must as well. You need both kinds of POA.

Sorry that your husband has AD.

My FIL has severe stage of regular onset AD - he is 91.


scorptired 02-04-2012 05:57 PM

Re: I'm new and exhausted...
Thanks for the info. The POA does include full medical, business, finances, & legal. We have been married for over 30 years so I think all our assets belong to both of us according to state law. I'm sad and scared because we have a 15 year old that needs tending to also. She's sad about the whole thing even though she's watched her father's mental capabilities deteriorate for a while. I've noticed recently that my husband seems to want to be with me all the time. He would look for me at home if I'm in another room or the bathroom and would just stand there waiting for me. This is all so new to me that I haven't even had the time to look through the support kit his neurologist gave me. I'm having a hard time sleeping because my mind won't shut down. Again, thanks for everything and it's great to have a venue to voice my fear and grief.

Suzy0513 02-04-2012 07:32 PM

Re: I'm new and exhausted...
I think I can only agree with the advice the others have posted, and send you support and good thoughts!


[QUOTE=scorptired;4922309]My husband (63) was diagnosed with Alzheimer's recently. He has been forgetting a lot of things, not recognizing people he has known for years, gets agitated and throws things on the ground or floor (normally a very easy going man), still has a driver's license but, I forbid him from driving. I'm just exhausted because we have a business that needs to be run and I've had to take over his role in the business, take care of our daily lives, raise our teenage daughter, and fend off the scam artists who have tried to profit on his inability to remember things. I'm fumbling through this whole process and am thankful for this site.[/QUOTE]

debbie g 02-04-2012 09:32 PM

Re: I'm new and exhausted...
these boards are wonderful. support is what we all need. hugs to you

Gabriel 02-04-2012 09:33 PM

Re: I'm new and exhausted...
Yes, it is exhausting and scary and is constantly pulling you in different directions. Getting all the legal documentation out of the way was a wise move on your part :) That will make your life easier in the long run. You can't assume that just because you were married for so long that all will be ok... the paperwork you have proves it is ok :)

Yes, your daughter does need you. It is hard for us to grasp what is happening, and it has to be even more confusing for a 15 year old. My best advice to you is to make sure you carve out time for your daughter. Talk to her. See how she is feeling. What are her fears. If necessary find a trusted friend, professional, or other adult that can mentor her. Give her a soft place to fall when she is overwhelmed. But most of all be there for her. Don't let all this take away from what can be between you and your daughter. And I will say again, you have to take care of yourself as well!!

It is typical for someone with dementia to want to be close to the person that they recognize. A large percentage of his world is a blur of confusion but obviously you are his stability. As annoying and exhausting as it can be, there may be a time that he will not be mentally of physically able to hang right behind you. You will learn patience :) he is not trying to be annoying. He is just trying to find something that has meaning and familiarity. On those days I got so very frustrated with Mom or Dad... I would try to put myself in their head. That would ground me and give me the patience I needed.

Prioritize what you need to do. Make a list if necessary. Check off what is done so you will know you are making progress. If there are things that can slide... let them! In the end nobody wishes they had worked harder or had more... they just look at the relationships and love in their lives :)

Love, deb

ninamarc 02-05-2012 12:28 PM

Re: I'm new and exhausted...
It is hard for a teenager to realize that her Dad is sick and confused. It is hard beause he will be more mentally ill as well physically sicker. The sicker he is, the harder it is.
You may need to consider a home for memory impaired. Maybe not now, but some day down the road. Think of your daughter. She needs a normal home and her Dad is sick and confused and will cause chaos in the home. Yes she needs support group and so do you. Somewhere down the road, you may need to consider a nursing home. Assisted living is not good enough for people with dementia.


Beginning 02-05-2012 02:44 PM

Re: I'm new and exhausted...
I've been in your shoes, and remember how overwhelming it was. I even remember the stage where DH would follow me (or our daughter) around the house. Privacy was a thing of the pst.

I lived with lists for years, to try to keep everything in the air. At one time I had three teenagers! I got to teach each of them to drive with their Dad in the childproofed backseat....shudder.

Adult day care was a life saver when DH's illness progressed. He was a big helper for them in the beginning, so it was a win-win situation. We used an Easter Seals program that was fairly reasonable in cost. It let our kids do homework or school activities for a few hours after school, without having to care for their Dad. It also let me continue to work. Eventually our kids were able to drive and pick him up too. I also hired someone to care for DH at home two days a week, to give him a break from day-care and provide more flexibility.

I talked to the guidance counselors at our kids' schools. They are trained in all sorts of grief counseling, and can help kids whose parents have died, are getting divorced or who are very ill. They obviously don't encounter too many Alzheimers' cases though. High school can be stressful without worrying about a Dad's illness. One of the counselors offered her office as a safe haven if things became too much. Our daughter broke down in tears in her office at least one time during her Dad's long illness when he had another big step-down in abilities. The counselor called me and I was able to leave work. We got through of the many lows.

Depending on her personality, your daughter may find it helpful to volunteer for the Alzheimers' Association, a hospital or nursing home. Our kids were all very active with the Alzheimers' Walks and other fundraising events, and volunteered wih hospitals starting at age 15. It got them away from their Dad, helped them to understand the disease, and even led to some scholarships. (Our kids are now in colleges and grad schools).

Your daughter may also find the forums at the AFA teen website to be helpful. She'll discover that she isn't alone, and there are others her age in the same situation.

It's a long, lonely road but you will find the strength and get through it. I discovered so many wonderful people, like a plumber who spent three hours at my house to solve a blocked water line caused by DH throwing clothes in the toilet -- who only charged me $50, because his grandfather had Alzheimers.

DH was home by himself at the beginning of his disease, and then in day-care for about 3more years. He was able to see our youngest graduate from high school and our oldest graduate from college although I'm not sure whether he understood what was going on by then.

We finally had to admit him to a nursing home in the 8th year following his early onset diagnosis. He's been in the nursing home for 2 years now, entering his third year.

I strongly recommend spending the money on an hour with an elder attorney. It was one of the most useful things that we did. I made a lot of lists based on the one hour of advice that we got. I learned to keep all of our financial and bank statements (someday you will may need them for a Medicaid application), how to title our cars and home, what the look-back rules were for asset transfers, to change beneficiaries on life insurance policies and retirement plans, and countless more details that I might have forgotten without this advice. I got some pointers about applying for Social Security disability benefits for DH, and learned that we would also get money for each of our children until they graduated high school (which helped with their college saving). It was a few hundred very well spent dollars.

scorptired 02-05-2012 09:58 PM

Re: I'm new and exhausted...
This evening on the way to drop off our daughter at a friends', I started the conversation about DH's illness and that we all have to work together and try to be more understanding of each other's needs. DH was lucid and was apologizing to our daughter about how he was and she started crying. She's a very loving, soft, and caring child but she can't help feeling that she's being cheated of her dad. Our older daughter is 24 and is in grad school a couple of states away and the younger one vividly remembers the father/daughter dances that they went to and how she's not going to have that. She didn't bring any of that up tonight but, she did say she was worried that I would get so exhausted and tired of all my responsibilities that I would leave him. I promised her that we were married for better or worse and illness is not a choice for any of us, just something we have to deal with and hope that the quality of life doesn't change too drastically for all of us. She did thank me tonight when I picked her up for bringing it up so we could all talk about it openly and that she feels better that I will always be there. I feel so bad for my daughter and I know my husband feels the same too. :(

Beginning 02-06-2012 02:44 AM

Re: I'm new and exhausted...
My heart breaks for you. Yes, we had the same conversations! After the diagnosis, we even renewed our vows to confirm better or worse. We included the kids in a family ceremony.

DH tried so hard not to be a burden too. One of the perverse blessings for him was that he lost the abiity to worry about being a burden to the family in about 2 years.

Having a young Princess/Daddy's Girl who deeply loves her father (combined with just being a teenage girl) makes for a particularly hard time for your daughter. Our daughter's siblings are now also in their 20s. They went off to college eventually, and didn't see the whole progression of the disease at close hand.

A teenage girl's life is very dramatic under the best of times. At various times our daughter would cry over not having her Dad to walk her down the aisle. to teach her to drive, or over some other lost future event. Most teenage girls cry about boyfriends or things at school. Our D cried about her Dad. One of her high school friends lost a parent to cancer, and she realized that she wasn't the only one to go through tragedy. She's in college now, and she will still become sad about Alzheimers taking her Dad away. Our D was a lot younger than your D when DH was first diagnosed. He was in day-care by the time she was 15, and went into a nursing home during her senior year of high school.

You get to do your own crying after everyone else is asleep. I can tell you that you'll both get through this. Hug.

debbie g 02-06-2012 04:08 PM

Re: I'm new and exhausted...
its so hard with children. its wonderful for you to be open and honest. your daughter sounds like such a sweetheart. she wants you to take good care of yourself so i am hoping you can try to do that. hugs to you

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