Posted 11/14/2008 9:53 AM (GMT -7)
(((((((((( pr glo ))))))))))))))
Hugs for you sis! It is so hard, isn't it? You are a saint! Helping with your aunt to such a huge degree. God bless you !!
Yes . . . hiding things is really common in this disease. We finally gave dad some good looking fake money and he was pleased as punch. But he eventually would wrap it in a kleenex or paper and rip it up . . . so we kept plenty on hand. I would fold it in my palm and "secretly" hand it to him . . . like we were passing contra ban . . . he would wink and palm it, take a peek and put it in his wallet. Hopefully, you eventually find ways to manage each of these issues. Some of it is just ignored.
When she comes up with the "stories" . . . they may be real, but in the past . . . and it seems to me like Dad had a hard time realizing what was in his memory and what was present. So everything he would "think about " seemed like it was happening now.
The crying . . . Dad did that too. He would say "My mother is dead" and start crying. And I would say, "Yes, she is gone . . . but you were so good to your mother". He would be so happy to hear that. Other times, he would say "I'm broke, I have no money." and cry . . . and I would give him a piece of paper with my name and phone number and tell him to call me any time he needs something. Somehow this was a huge comfort to him, to have that number in his wallet. I probably gave him my name and phone number 100 times, because that's what gave him comfort.
Other times, when I couldn't figure out why he was crying, I would say . . . "Can I pray for you, Dad?" and I would take both of his hands and hold them. And he would bow his head and close his eyes and I would say a short prayer like " Dear God, thank you for this wonderful man. He is very frightened right now. Please bless him and comfort him, and help me to know his needs and care for him ." He was always comforted by prayer.
Do talk to her doctor about the D . . . because she might not be getting full benefit from her meds if they are leaving her body so fast . I would also talk to your pharmacist and bring the full list of meds so he can tell you the best way to take them. Some meds can be taken together and some just work better if they are taken a certain way and with or without certain foods. So the offending med, might be best taken at night when the colon may be less active. Just a thought.
Make sure you are utilizing the Alzheimer Associations in your area. Ask each of her doctor's what help is available and make as many phone calls as necessary to get some help.
WRITE a letter to her sons. When my Dad needed round the clock care, I was going to mom's about three days a weeks for a few hours each of those days. But I was concerned that Mom needed more help than that. My brothers are dear . . . but no number of phone calls elicited any more than one visit. So I made out a schedule and wrote a letter:
Dear sibs . . . Mom needs your help. She will not ask and I am afraid that this is taking too great a toll on her. I am spending a couple days each week there, but it just isn't enough. If you could each spend one Saturday per month with Dad, it would give Mom a bit of a break. In birth order, could you each take a turn.
Ed, 1st Saturday of each month,
Bruce, 2nd Saturday of each month,
Donald, 3rd Saturday of each month,
Judy 4th Saturday and
I'll take the 5th Saturday.
Please come at 10 am and plan to stay until 2:00 pm. If you can't visit with Dad on your day, please call a sibling and switch days. Please don't let mom talk you out of your day. She has a hard time asking for help or accepting help, but she desperately needs a break. I have asked her to keep a list of things she needs help with. I started such a list and posted it on the refrigerator, so make sure you check the list each time you come to see if there is anything you can help with.
Thanks so much for your participation.
I am happy to say that this letter began a couple years of help from every sibling and they were very dependable and actually took care of all items on that list. I was amazed that siblings who were not involved at all were happy to help when they knew exactly when to be there. It was awkward for each of them at first, but after spending a day or two with Dad, they found some creative ways to spend their time together and Dad enjoyed it too.
Sorry this got so long and I don't mean to be talking about myself so much, but it is the easiest way to show some ways of problem solving. I deeply appreciate the help I received on this forum . . . so I check back here occassionally, even though Dad is gone, because I know how hard it is to go thru this with a loved one.
Some hot tea for you sis . . . and a big hug too!!
In His Grip
AlwaysRosie " We can't control the waves, but we can learn how to surf!! "
Co-Moderator - Lupus Forum
UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)
Clickable Links: Lupus Resources Lupous.Org Lupus Criteria (4 of 11) Lupus Chapter Locator