8 Replies Latest reply on May 21, 2012 11:06 PM by Mindy

    Alzheimers

    SusanR
      Anyone here have a spouse with Alzheimer's?.  My husband was diagnosed about 6 months ago. We are recently retired (last 6 years). There go the plans for our retirement. I now have to rethink everything! We do not have long term care insurance so there will most likely be a tremendous financial toll for us. I have already had to take over all the finances and make the decisions. I discuss things with my husband but he is not able to make decisions. We moved to Texas from the central coast of CA when we retired to have a lower cost of living. I am now considering moving back to CA to be near my adult children. They are willing to help me if and when I need it.  I am still in shock and am having a hard time getting going on plans for the relocation. 

      Susan R
        • Re: Alzheimers
          FayeSD
          I am so sorry to hear about your husband,  What a horrible thing to happen.  We all dread the thought of a similar situation especially if there's a family history.  My husbands father was diagnosed in his 70's and spent the remainder of his life in a nursing home after his wife could no longer care for him.  In our state the programs for this situation allow the spouse to keep the home and car as well as 50% of the cash assets once the person enters a nursing home.  Your husband would have to use his 50% to pay for medical bills before the state would cover the nursing home bills.  I think they also took his social security payments.  I would suggest that you make an appointment with a Social Worker for you states Department of Social Services to determine what the laws are in the state you decide to reside in during this period.  There are ways to keep the medical bills from depleting all of your assets.  It's not what you might chose to do but at this point you need to do everything in your power to maintain a reasonably good life for yourself.  Prayers to you and your family.
            • Re: Alzheimers
              SusanR
              Sounds like your state is one of the better ones for keeping your resources. I'm in Texas now and they don't have that option. The spouse can keep 100,000 in resources and her income and you and your spouse can keep  a house up to a certain amount. .  Not much to live on for the next 20 years. In CA It is about the same but the house limit is larger. i am going to try to keep my husband at home as long as possible but we will see. I never imagined this would happen to my husband of I. My husband is otherwise very healthy has exercised and taken care good care of himself all his life.
              But it is what it is and I still want to try to make the best of a difficult situation. And I am thankful that my children are so good with us. It is a transition thinking of depending on your children for help.
              Thanks for you comment and kind words.
            • Re: Alzheimers
              indigogirl17

              Susan,

              What a hard thing...my prayers and thoughts are with you.  have you had a chance to locate local facilities or day care options for your husband as this disease progresses?  If your children are willing to help, all the better.  It is wonderfult hat they do.  Finding your local resources will be so important and a support group for yourself.

              Blessings and care,

               

              Cynthia

              • Re: Alzheimers
                Buttercup
                Susan, My husband had alzheimer's for 12 years before passing. By the end my daughters had graduated from college and were living at home for most of this.  While my children were a wonderful help to me, it is a toll on all the caretakers. I suggest you read The 36 Hour Day. It was my bible for 12 years and beyond. this is a long post so keep scrolling down.

                I found keeping a log, just brief notes, such as, J sleeping more or John asked who I was and the date, helped me. I would print this out and take it with us to the doctors. 

                John was a Korean War veteran and as the cost of meds went up, I changed his care to the local VA Hospital (Coatesville, Pa for us). . For the first locked ward nursing home I needed to use Medicaid. His admittance was an emergency admittance, and then I applied for a VA Nursing Home. financially and medically this was better as I received a portion of his retirement to live on - the non-va nursing home took all his retirement money.plus medicaid.

                Definitely get Power of Attorney for Medical and Financial. Have an Elder Lawyer do this to make sure it is legal. We only had the house we lived in (and bills) but the financial is important to have, and the Medical was the best suggestion from the VA social worker. I needed to enforce the medical PofA at the end of his life. I needed the lawyer after his death to help with bills sent to me from both nursing homes.. The lawyer's fee of $300 to write two letters was priceless. He knew the technical words to write, I didn't.

                and importantly, don't isolate yourself. It takes a village of supporters to help care for you and for your husband. Close the windows of your car, drive down the street screaming at the top of your lungs, or crying as I did. If I can help by writing to you (privately) let me know.



                 
                  • Re: Alzheimers
                    meme530

                    As a nurse involved with the support of alzeimers' caregivers I can't agree more with Buttercups words. Please contact your local Area Agency on Aging for resources and consider an Adult Daycare program for your husband. Studies have shown the disease progress can be slowed in many case because of the mental and physical stimulation. This will also provide you with some breathing space and in some programs there is financial assistance and support groups.

                    Keeping you in my thoughts & Prayers.

                    Joan

                    • Re: Alzheimers
                      SusanR
                      I appreciate your very advice and I can tell that you have walked this path. I do have The 36 hr Day.  I like your suggestion about keeping a log.  My husband served for 2 years active duty in the Navy but he never served during a war so I don't think he qualifies for VA help but I will investigate further.  This may be a long journey for us as well, my husband is in excellent health except for the Alzheimer's.  I would like to be able to contact you privately. Can it be done through this site?

                      Thank you,
                      Susan
                    • Re: Alzheimers
                      Mindy
                      I read an beautifully written article by a heart broken daughter about her memory lost mother's last journey of her life.  The article: When Memory Ends, by Maggie Steber, in National Geographic, November 2007, Page 56.  I would like to share it with all of you.  It is a short one, so I quote it below.

                      "My mother, Madje Steber, is experiencing the melancholic voyage of memory loss.  She is at sea.  As her only child, I have booked passage on another ship myself, to sail across the lifetime of memories that once described her life.
                      I photograph my mother to help me get through this voyage, creating new memories for myself along the way.  I show the photos, even if she does not recognize herself.  For her, they are postcards from distant lands.  How can she be so achingly beautiful now, even though her brow is knit with confusion?  She disappears from my view before my very eyes.  With each day she nears the horizon she will reach alone, leaving me with only memories, precious memories, of her long, last journey."

                      I read it many times, could not find words but tears in eyes.