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Old 07-09-2011, 08:10 AM   #1
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alzheimers spouse

This is a first posting, I am the 78 yr old wife of an 80 yr old man who has just been diagnosed with 'early' Alzheimers. I am a nurse, so reasonably knowledgeable, but am needing help with the changes this disease brings...lack of companionship, conversation and the long term outlook which is devastating, emotionally, financially, etc. Where do I go on this site to have suggestions from others in this situation?
Many thanks.
Dancyn

 
Old 07-09-2011, 09:13 PM   #2
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Re: alzheimers spouse

Dancyn,

I admire you for going online looking for help.
My father-in-law has had Alzheimer's for at least 8 years. He was diagnosed in late 2006 but he had been sick longer than that. Now he has stage 6/7 and is in a residential home. He is 90. My late MIL passed away in 2004. I have seen how his disease declines slowly over the years.
You have a long way to go. You need to hire a caregiver. If it is possible, you may want to look into a facility that can make his life content.
My FIL had had home care for at least 5 years until last summer. It is a difficult path.
As a nurse you certainly know what is going to happen. Eventually you will need to devote 24 hours caregiving to your husband. Plus you have your own health issues...
I am sorry that Alzheimer's brings you to this site, but here is the right place. People like Deb or Megan are very experienced with their parents who have dementia.
Sadly my FIL is also in late stage.

Certainly we can help you here from time to time according to our past experiences. So please feel free to post and ask any question or vent!

You are in the right place.

Take care,
Nina

Last edited by ninamarc; 07-09-2011 at 09:14 PM.

 
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Old 07-09-2011, 11:06 PM   #3
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Re: alzheimers spouse

Dancyn.. I am so sorry that you are having to deal with this disease.... but glad you found us. We have all had to deal with this disease in some way.

I watched my Mom care for my Dad who had Vascular Dementia for years. He was misdiagnosed with Alzheimer's in l998. Mom cared for him until 2006 when she was diagnosed with Alzheimer's. Dad died March 2010, and Mom is in a care facility still.

Having watch Mom and Dad, and having the dementia journey with both of them I can tell you it's not easy. It is almost impossible to be where you are now and absorb all is going to happen. It's mind boggling, especially at first, because your entire idea of what life is going to be is turned upside down. Give yourself time to come to terms with what you now know. The emotional impact will have you on a roller coaster for a while. Your brain just can't absorb it all so you will grasp the reality one little piece at a time.

In time you will get a better understanding. Knowledge is a powerful thing and you need to know all that you can about the disease. Then you need to make a plan. Not a plan carved in stone but a plan to follow until the situation changes. You learn to be flexible. In that time you will be able to come to grips with what you are facing. You will also learn to take one day at a time. Leave what might have been behind. Don't worry too much about what tomorrow will bring. Take today and today only. You will also find a way to grasp those moments of joy before it is too late. Please do not get so caught up in dread and grief that you miss the best of what is left.

Be sure the legal papers are taken care of. Power of attorney, medical directives, living wills, wills and any other legal papers have to be done sooner rather than later. This will make life much easier later. You do need to get help. It can be family help, in home help, respite care, or daycare. Just know that you can not do it all, all the time. This is not because you are incapable but because the demands of this disease are far beyond any one person's ability to handle it all. The sooner you both become accustom to having help the better for you both. Check out the care facilities in your area. If there is one that you prefer than put his name on their waiting list. You do not have to place him... but his name will be there when the time comes. I would probably be very beneficial and worth the expense to consult with a good elder lawyer to get everything in order. Also determine if he has any veterans benefits or insurance policies that might be helpful. If it is necessary to file for Medicaid then that process can be started by keeping the right records.

But most of all you need to enjoy the time you have right now. This is the best time you will have. Take in every moment you can and create those moments of joy that will carry you forward.

Please keep posting your thoughts and questions. It is good to get them out and know we do understand where you are. I hate you needed to find us... but welcome to our little group

Love, deb

 
Old 07-10-2011, 03:57 AM   #4
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Re: alzheimers spouse

Dancyn:

I haven't found any web site or board that is specifically for spouses of AD patients. It would be nice to have somewhere just for us, since we have some unique emotional issues.

You may find someplace to vent in a local support group. Your Doctor, a local hospital, senior citizens' centers, or a center for aging may all be able to point you to support groups. You may even try one or two before you find one that has more spouses in it. We found one that had separate meetings for the caregivers and the Alzheimers' patients themselves, for caregivers who can't leave their loved ones at home alone.

You've already gotten good advice, but keep in mind that right now you're grieving and panicking. Alzheimers will give both of you time to figure things out. There will be different stages that may occur over years to come. If you have other family, let them help you.

See if you can get in the habit of making sure that you have time for yourself. It helps you to maintain strength and balance in your life. I also found that this alone-time also helped me to start the hard process of starting to separate from thinking of myself only as being a couple.

You might even want to consider moving into senior or assisted living now, so that you can get a good support system in place while you're still in good shape and your husband may be able to help a little. This would help with companionship and others to talk to as you go through the next years. It could also help with future transportation requirements (some of them have shuttles to malls, doctor appointments, etc.) if you're planning on future transportation issues, and with cleaning and other services so that you don't have the weight of the world on you. Other activities, like church groups or volunteering, might also help with the loneliness.

Hugs.

 
Old 07-10-2011, 07:15 AM   #5
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Re: alzheimers spouse

Quote:
Originally Posted by dancyn View Post
This is a first posting, I am the 78 yr old wife of an 80 yr old man who has just been diagnosed with 'early' Alzheimers. I am a nurse, so reasonably knowledgeable, but am needing help with the changes this disease brings...lack of companionship, conversation and the long term outlook which is devastating, emotionally, financially, etc. Where do I go on this site to have suggestions from others in this situation?
Many thanks.
Dancyn
My journey with my mom's Alzheimer's started in 2001 and ended this year. My father chose to keep mom home until the very end. That decision entailed me moving in and helping care for mom as well.

Many families cannot keep a family member home until the end, but if it is a possibility, it is the best option. We had the involvement of dad (the spouse), me (the daughter), Anne (her sister), and my daughters (her adult grandchildren). We also hired caregivers and later had Hospice come in. Note about Hospice: Hospice does not only help those in the last month or weeks of their lives. In our case, Hospice needed doctor's proof that mom's disease was irreversible, and when she entered her last stage, they came in and helped us for over one year.

To start, is your husband on the two medicines given (Arisept and Namenda sp?)? Getting him in with a dementia specialist which has a team of people to focus on the emotional as well as medical issues is ideal -- if you have the insurance to cover it.

Also very important is to meet with an attorney who specializes in caregivers of dementia relatives. Meeting early with the attorney is necessary as there are several steps which will be taken throughout the journey, some of which may require your husband's signature if he is still deemed capable of signing documents. The attorney specializes in the necessary steps needed to help secure you financially.

Early on (i.e. very soon) I suggest that you and your husband have your photo taken -- a portrait with family. We did with twice during mom's disease, and we cherish both portraits so much now. Also, keep the camera handy throughout the process and take photos of your spouse and video. The video memories are ones that you will also cherish later.

There is so much to do, but for now I will suggest only two more items.

1. Get a board to post the following message on where your husband will see if every day. On the board at the top write down:

"IT IS MONDAY" (or whatever day of the week it is)
"YOU ARE AT HOME" (or wherever they are)
"YOU ARE SAFE"
"YOU ARE LOVED"


We were given this suggestion early on, and it helped mom feel she was still able to be aware of some things.


2. Do not talk about your spouse in front of your spouse as if he is not there. Too many people, including well-meaning medical personnel, will do this. Remind others that he is still there and keep him included in the conversations. If some matter needs to be discussed about him, then excuse yourself and go into another room to discuss it out of hearing range.


Good luck and God bless.

--Karen

 
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Old 07-10-2011, 07:38 AM   #6
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Re: alzheimers spouse

Dear Karen:

Thank you very much for your good advice. I have to really work at the 'one day at a time' routine ...I keep thinking ahead to the long tortuous road. We have done the elder care lawyer, have all that up to date, have too much reserve to go on Medicaid, but not really enough to put one of us in a $90,000/yr nursing facility and have enough left for the other one of us (me) to survive. It is such a long journey. Many thanks,
Dancyn

 
Old 07-10-2011, 07:40 AM   #7
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Re: alzheimers spouse

PS...I just noted the Michigan in your address......I grew up in Lansing, my husband in Grosse Pointe, we lived in Ann Arbor for years until we came to RI. Hello to our home state for us!

 
Old 07-10-2011, 08:20 AM   #8
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Re: alzheimers spouse

If he's early in the diagnosis, you still have a lot of time but don't definitely assume that you can't take advantage of a $90K nursing home if nursing care becomes a necessity someday.

If you qualify for Medicaid (and that NH takes Medicaid patients), on the date of application you'll be able to keep 1/2 of assets up to $109,000 (plus a few hundred dollars), and your husband can keep some money too. The family home in which you live, prepaid funerals, cemetary plots, one car (even a new Mercedes) aren't counted. In some states, the non-institutionalized spouse can keep their own 401K and IRA accounts. The non-institutionalized spouse may also keep their own income. A spouse may also be able to keep the institutionalized spouse's Social Security under certain circumstances.

This is really complex and varies somewhat by state. There are "look back" periods to identify asset transfers and you need to obtain copies of all bank statements, home title, life insurance policies, etc. for about four or five years before the spouse is institutionalized. If you have assets, qualifying for Medicaid is complicated and you should probably request the assistance of an attorney. Mine charged about $5,000 for the application.

The non-institutionalized spouse is not left destitute as a result of this process. It takes time to pull records together.

Medicaid has worked wonderfully. I don't worry about deductibles for insurance or medications anymore, and DH receives exactly the same care from his NH that he received before he qualified.

Anyway, this is all part of planning ahead. You don't need to do anything tomorrow, but I'd add learning about this to your to-do list.

My husband's nursing home admissions office didn't tell me the truth. They said to call them when we were down to about $20,000, and they would help me with the application. Thank goodness that I didn't listen to them, or I would have used money that I was entitled to keep for his nursing home bills. I had been working with my lawyer before DH was admitted, so I knew the admissions officer was not being honest with me.

Last edited by Beginning; 07-10-2011 at 08:27 AM.

 
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Old 07-10-2011, 09:47 AM   #9
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Re: alzheimers spouse

I would like to say that home care may not be the only or best option.
It really depends on the person. Money is one issue but it can be dealt with.

Usually it goes downhill to the point that the home care is too open for a confused dementia patient. My FIL was at the point that he needed a nursing home or a residential home with nurse stations given his serious medical conditions such as congestive heart failure and bladder issue. He cannot walk freely without help now, and his old house has no way to accommodate his disability. Private home care 24 hours is also expensive - we don't live with him as we are in another country due to job reason.

We had kept him at home as long as possible. I understand that you feel your spouse should be home. It is a good idea. But at some point, he may or may not be able to stay at home and you may not be able to cope with it. One day in 5 or 6 years down the road, you may hit a big block if he still stays at home.

Karen's idea is super too but she had lots of help. This is only good for a big family. For a small family, you alone cannot do it all the way unless you call your adult kids to help.

A private home is an open environment. Eventually he has to be confined in a place such as memory unit or dementia unit in a facility so he does not wander out and die in the cold. So there are lots of factors....
Some homes are bad but don't rule out the possibility.
There are good homes. Where my FIL is is pretty good.

We all hope the elders can stay at home until the end, but it does not work all the time.

Hugs,
Nina

Last edited by ninamarc; 07-11-2011 at 07:36 AM.

 
Old 07-10-2011, 07:59 PM   #10
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Re: alzheimers spouse

As is always the case with this board, you have gotten several spot on suggestions! The people here have been there and done that for quite awhile now. I wish wish wish I had found this board way before I did because it is a treasure trove of helpful advice including the much needed hand holding. We may not see one another's faces here but we see their hearts in the words typed out in times of need.

My mom is in an asst living facility but in the locked Alzheimer's wing. She is loved and cared for...everyone's situation is unique to them and we all do what is best for our loved one.

I loved the advice given to you that as a possibility you and your husband could move in together into an independent facility now so you have a support system already in place as things worsen.
I tried to talk to my step dad about that before he died unexpectedly..it would have been perfect...but he didn't act soon enough. Had he, when he died, my mom would have already been in a place where she was known and where she had already learned the ropes WITH him by her side.

I moved my mom to the independent facility on the grounds when she was in the moderate stage of the disease...and by doing so, she was known to all the employees as a happy go lucky, dancing, walkin' all over the place lady...and now that she moved over to the assisted living side, the staff knows her as she was before things worsened. She is not just another little old lady to them.

It is hard in the beginning to not imagine all that lies ahead...but you can only make yourself batty by doing so. So..."don't borrow trouble"...worry about the here and now and not next week or next month...just let it go and get though today.

Yes, get all legal work in order then try to sit back and enoy the life you have right now...today , this moment.

My mom is in the final stages yet she still smiles daily. That is my only goal...to see her pretty blue eyes sparkle and her pearly whites flash my way before I leave her for the day. That's it.

Prepare yourself the best you can, then come back to us with questions. No matter what it is or how it deals with the disease.

Love, Meg

 
Old 07-12-2011, 02:39 PM   #11
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Re: alzheimers spouse

I am a Grosse Pointer, too!! My mom has dementia.

 
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Old 07-24-2011, 07:15 AM   #12
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Re: alzheimers spouse

Better late than never, thank you Linda, Dan remembers his GP days happily. I lived in Lansing, so the Michigan connection is important to us.
Cynthia

 
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