Double Whammy

saltom

Our southern California daughter and her husband came to visit from last Thursday to this morning. Things are always a bit discombobulated when they come as they often use us as a central point for other activities and our SIL likes to keep busy.  I keep a to do list for when they come.  SoCal daughter is the younger of our two daughters, and her older sister (a life coach for ADHD adults) has always thought her sister is a little ADD.  I love having them and we do a lot of laughing, but their visits are often a bit difficult for my DH. He handled this one very well and seemed to enjoy it.  The double whammy is that SoCal daughter who just turned 58 has been diagnosed with EO, and it is beginning to show.  It has probably been brewing for 3 to 4 years. Her husband has been able to get her into two UCIrvine trials, one was either a huge dose of a vitamin B or a placebo. The other one is the second phase of an 18 month study that starts this month. DH has been told though I don't know if he remembers either he or his daughter has ALZ.  He is usually still asleep when they leave to go back home and was this morning. I always say good bye for him.  This morning he was quite upset he didn't get to say good bye. (At first he thought it was his sister who had been visiting).  I told  him I would call our daughter when they were home and he could say good bye then. Which I did, and he did mentioning how sorry he was he didn't get to say good bye when they left. I went out of the room and cried.  I feel so helpless and am just grasping at remembering the good moments. Thanks for listening.

M1

Oh Saltom that is especially hard to have your child affected as well as your spouse.  Double whammy indeed.  

My children have recently informed me that my ex is also affected, as well as my current (28 years) partner.  A long-time serious bike rider with family history of alzheimer's, it seems that head trauma from multiple previous wrecks is playing into it.  I feel for the kids, having to deal with it in multiple relatives, though i try to shield them from the worst of my difficulties.  I can tell they are worried and upset though.

I'm glad your daughter is getting good care and has been able to get in research trials.  Have you told your SIL about this site?  Maybe it would help him, too.

Ed1937

Saltom, we can understand why you left the room, and cried. I'm so sorry.

Cherjer

It is one thing to have your dh diagnosed with AD, but now your daughter. That is my fear that my son (42) could be affected as my husband has the APO4 gene. Bless you and stay strong.

Joydean

Saltom, your tears are understandable! I can’t imagine what you are going through. Just know we are all here for you. Take care of yourself. 

fayth

I'm wondering if you are all aware of the Dominantly Inherited Alzheimer Network (DIAN):   https://dian.wustl.edu/.

If you don't already know about this, please take a look.  This is based at Washington University School of Medicine in St. Louis, MO. It is an international research effort focused on dominantly inherited Alzheimer's disease.  Our family is part of this.  My husband has a genetic mutation that caused early onset Alzheimer's and he is in late stage 7, at age 68 (diagnosed at 62).  His mother and brother were diagnosed in their late 40's and died by the time they were 57.   My husband's illness is far too advanced for him to be part of research and trials, but it is an amazing support for my young adult children who have to worry about this in their own future.  It is also support for me, as the primary caregiver.

saltom

My SIL is actually the one who told me about ALZ.org which led me to this site.  I think he is going through his local chapter postings.  We are fortunate both our daughters married really wonderful men whom we are blessed to have in the family.  It is a relief knowing that our SIL is arranging the best care and life possible for our daughter.

Paris20

Saltom, I am so very sorry. I think many of us on this forum harbor some fear that this can happen in our families too. My husband, who has AD, lost his grandmother to the disease when she was 63. I fear for my daughters and grandchildren. I hope you can get the support and love you need to get through this. We are here if you need us.

Jo C.

Dear saltom, once again, another time that there are not words sufficient.  I am truly and deeply so sorry for what is happening.  As a mother and wife, my heart understands the pain of this and the deep well of never-ending tears whether on the inside or outside.

From my viewpoint, I do not think that it matters whether your husband who has Alz's, remembers or not that he has been told his daughter has the same disease.  In fact, it is probably a kindness not to keep bringing it up to him as he has no retention and must suffer the stunning news each time he hears it.

It is truly a blessing that your SIL is such a loving husband and a truly excellent advocate.  I understand that UC Irvine has a full dementia clinic with all that provides; that is a plus.  You need to be able to share and be heard; support is so important, especially when there is nothing we can do to change matters especially when it involves our child.  No matter how old they are, they are still our children who we carried and reared; there is no bond stronger.

Build your support system as much as you can; your health is important too and you are deserving of others who care and will lend their ears and shoulders in this deeply sad situation.

We are here for you, so please do come and talk as often as you wish. 

J.

saltom

JoC, thanks for your insight and wisdom.  This forum has become a daily read for me both as a support and to keep me grounded. I'm very fortunate to have a support system of friends and make sure I get time with them. I've found that instead of meeting them somewhere for coffee, I can have them come to my house where I have space for uninterrupted talk.  My DH is still quite comfortable with this, and while he can still be left alone for short periods, he is very anxious if no one is here.  I have a caregiver come in two mornings a week so I can go walk with my friends.   We have not mentioned the ALZ word to either my DH or daughter as they will not remember any way. Though they do remember they can't remember a lot of things. We have enough efforts in futility that I don't want to add to the pile.