Good Morning Everyone,

I invite you to log onto the home page - www.thealzheimerspouse.com - and read my latest blog. What happened to my friend can happen to all of us in a second, and then what? Do you have a plan? It's very important to learn from what she is going through, ESPECIALLY if you do not have money. If you have money, having your spouse looked after is no problem, but if you don't................it's a big problem.

joang

Joan:

I think about it constantly. It is virtually impossible to be prepared for everything. 10 yrs. ago I would have said our legal affairs were all in order and we could enjoy our retirement stress-free.

Now I can see if something happens to me, that all goes out the window. My children would have some heavy-duty decisions to make regarding their father. DH cannot be left alone for more than 4 hours. He would have to go into an ALF and the kids would have a fight on their hands. DH thinks he is fine. Our durable power of attorney was good at one time but now I can't have DH with power of attorney for me. That has to change soon. Right now his meds are not a problem as he doesn't take anything he can't temporarily do without .

We must be the strongest people on earth to live with ALZ spouses. For the most part, we are actors never able to show impatience, disgust or major disappointment. Our real personalities are always kept below the surface. Love isn't just the glue that holds our relationships together but guts with a capital G.

I've been thinking about this a lot, because in addition to having dementia, my DH has several other serious/complicated medical issues. There are doctors all over a three-county area, enough meds to stock a pharmacy, medical appointments and scans and lab tests—you get the idea. I've written down a lot of this, including which doctors are managing which problems, when meds get taken and what for, and everything else I could think of.

The problem, as I see it, is WHO in the world, other than a spouse, would take this kind of care of somebody? I mean the kind of care where you watch for symptoms, like Joan said, and medicate based on what is actually going on at the moment. DH has already been to a nursing home twice for respite, and they certainly didn't provide that level of care. They may administer meds on schedule, but don't even try to manage all the as-needed things we are dealing with. I'm afraid that even if I do have everything written down, nobody will bother to read it, or if they do read it, they won't take the trouble to do it. Caring for somebody with all these medical issues is a lot of work, and I don't see a distant family member or a paid caregiver going to that much trouble.

Add to the mix a husband that no facility will take on for temporary respite care due to aggression. After my first TIA, I had to check myself out of the hospital against doctors orders because I had Lynn with me and no one to look after him. The next day I got a call from social services! They were nice enough and even helpful. They said I needed to come up with an emergency plan, and they would help me. I felt relief for the first time in ages, but it was short lived. No one would take Lynn! I was stunned.

They did set it up for in home help. But Lynn refused and threw them out of the house. I begged and pleaded for help, but they told me flat out they would no subject their help to Lynn's abusive behaviors. So we did have a nurse come in to check his vitals, and they arranged meals on wheels. Both helpful, but not the kind of help I needed. I wanted what they promised, someone to bathe him and look after him so I could get some much needed time away. Nine TIA's later, I placed Lynn. Still hurts deeply.... and I still feel I failed him. But, it turned out best for Lynn, he is now back to being the kind, gentle hearted man I fell in love with. He is now so peaceful and content, and that brings me happiness.

Something’s, you just can't plan for. I HAD planned on keeping Lynn home with me until God called him Home. Just didn't work out that way.........

Joan, as soon as I read your post about never prepared enough I went on Amazon & bought the book you suggested. I got it in the mail today & I actually started filling it out. It is very detailed. It's not only information about what you want done for you by a caregiver, but it has you list detailed information of things you like, dislike, etc. It will really be helpful for anyone who has to be a caregiver for me. Know what else? While I was answering some of the questions I realized that it has been so long since I have thought about myself. This book asks detailed questions & you have no choice but to think about what YOU like. I'm glad I got this book. Thanks Joan.

After almost losing Lloyd in April 2011, I went to our attorney and tied up all our loose ends. My will states that he remains in our home in my daughter's care and that all decisions would be hers. She moved back home with her family over a year ago so I could quit work and take care of him. I pay the mortgage and his medical and our insurances and she takes care of everything else. He has 3 kids, but they aren't even responsible enough to take care of themselves and are clueless when it comes to him and his needs. She is named as a second beneficiary in his will and she will inherit everything when we both are gone. She knows she is expected to share with her siblings and step-siblings as she sees fit. I personally don't care what she does. I just want her to know that I respect that she gave up everything to be here for us...and I do mean right here. I have 3 kids and they would do anything in their power to help. I feel lucky and proud that they have the sense of family that I so wanted them to have.