Last post Sat, Mar 01 2008 6:43 PM by Liesl. 14 replies.
I am a Disaboom member with an SCI. My husband and I live with and take care of his 92 year old Mother, who has Alzheimer's disease. She's in the middle stages at this time.
Are there other Disaboom members who also care for someone - possibly a loved one - with AD?
I have Lupus, Fibromyalgia and have had lower back surgery (2002). My husband is a truck driver and is gone for several days at a time. My Mom has Alzheimer's (She's 76) and is in the middle stages at this time. My Dad (80) has heart disease, prostate cancer, and is showing definite signs of dimentia. They still live in their own house just down the lane from mine, but I don't know if that's easier on me or harder. Anyway I'm just trying to do the best I can.
My grandmother had Alzhiemer's/ Dementia before she died. I'm a Graduate student in Speech Theray so I also have clents who are at various stages of Alzhemer's and other degenerative cognative diseases.
BethT
I think my mom is in the beginning stages of AD. It's hard to tell, of course.
"Important events are obscure. Some believe all manner of hearsay evidence; others twist truth into fiction; and time magnifies both perversions."Tacitus
If you think your Mom has Alzheimer's the sooner you get her on Aricept, or some other meds, the slower the disease will progress.
I have tried, and tried to get her to get help. Unfortunately, her doctor dismissed everything I had to say and told her she was fine. Fine? Someone who turns on the water in the kitchen and leaves it to get ho then forgets about it to the point where she runs out of hot water? Someone who has lost her car keys twice in one month? The person who shows up in two different shoes? Yeah, fine. I don't know what else to do. Any suggestions would be GREATLY appreciated!
My Mom was diagnosed by a Psychologist who specialized in alzheimers disease. The oposite was true of my Mom and me. She kept telling me that she thought she had AD, and I kept telling her I thought it was only "senior moments". I made the appt with the Psychologist specialist just to show her she didn't have AD. After he gave her a battery of test he sat me and her down and told us that she had AD. I was the one who was SHOCKED! He took a long time to explain exactly how AD affects the mind and what we could expect. He also showed how the meds worked to slow down the process. That was about 5 yrs ago. I kept thinking maybe this "hot shot" doctor was wrong, but as time went on there was no doubt that she had AD. I'm thankful my Mom kept bugging me about it. If you can, get your Mom to another dr.
Pegster
I think I will call the AD association and see if they can recommend someone. She goes to a psychiatrist, but I suspect he has no idea about any of this.
Dear BrokenDoNotUse: I have been a member on this site for a few weeks now...I am an RBK amputee. Before I had my surgery almost 7 years ago I used to work in an Assisted Living Center for the elderly...beautiful buildings and surroundings , anyway,hte building I worked in was a Level 1 and we had a couple women suffering with Dementia....they were a joy to care for and their families appreciated us greatly for being there for them also. You and your husband are saints....don't forget to take care of yourselves also..God Bless
Hi pegster08 - thanks for your reply.
Even though your folks live very close to you, and have you there to care for them, it's really something they're still living alone in their own home. With your husband gone so much you've really got a lot on your shoulders in caring for your parents, and taking care of yourself with your own health concerns, don' t you?
Do you have any outside help at all, and what, if anything do you do for respite care? My husband and I are the entire "team" at this point, except when one of his brothers, who lives out of state, visited for a few days at x-mas. He has another brother who also lives out of state and will be visiting for a few days this month and we (my husband and I) have a date planned one evening! We're so excited.
We are now looking into some regular respite care as we realize we really need to have a break, together, on a regular basis.
Of course with AD and dementia there are always many issues - such as eating, wandering, hallucinations, etc. Do you have these kinds of situations with your Dad as well as with your Mom?
Have you been in touch with any of the Alzheimer's groups, such as the Alzheimer's Association? I went to a local chapter meeting about a week ago. It was very helpful and they gave me a packet of great info and helpful 'tips'. I was also sent an application for respite care financial assistance, and from their website I ordered Coach Broyles' Playbook for Alzheimer's Caregivers. It's has some pretty good information and helpful tips in it, and it was free.
How are you holding up, and how are you dealing with everything? Please let me know how you're doing, and take good care!
Hi Beth - So then you're very familiar with what we as caregivers see in our loved ones with AD. Fortunately my MIL is still able to speak and converse pretty well. She did have what I guess was a 'phase' at Christmastime when she was not really conversing at all but would instead only sing and use small sentences when talking. She would sing for two or three hours at a time when she was in bed at night, fall asleep and awake a few times during the night and sing before falling asleep again.
Her neurologist said we could give her an OTC sleep aid and that did help her go to sleep and stay asleep - with her not singing in bed anymore. She began conversing during the day again, and also after we found out she had a huge build-up of wax in one ear and had it removed (with much difficulty) she became much more lucid.
It's amazing how something that seems small - like wax in the ears, disturbed sleep, restlessness, boredom - can affect the behavior of someone with AD.
Hi Liesl - My MIL's PCP was so not a help to us when we were at the starting point with trying to get her tested for a DX and to get him to talk to her about not driving any more. She kept getting lost while driving - and we're not talking just a little. We're talking 60 miles from home out on one of the Pueblos. 30 miles from home on the west mesa, driving on a blown out tire, being found only after being lost for five hours and after we called the police dept. and they put out an APB on her and found her. But no, on the paper work we took to the doctor for him to complete for us to take to MVD to get her to stop driving he wrote that she was just fine. We were livid to say the least. Naturally we finally took the car keys away, and life was sheer hell over that for quite sometime, but oh well.
So that just shows you how uncooperative some PCP docs can be. Your idea about contacting the Alzheimer's Association for referrals and other suggestions is an excellent one. Also, I encourage you to take your Mom to a neurologist. We finally insisted that the PCP give my MIL a referral to a neuro doc within her healthplan, and it was the neuro doc who finally did the testing and made the DX. He's a wonderful Dr. and has been so good with us when we've been a little 'freaked out' and called on the phone to say "This or that is happening, what do we do?" or "This has happened with a medication, what should we do?"
We typed up a list of things my MIL was saying and doing, examples of what she was forgetting, specific examples of problems she was having with driving and administering medication for herself, the hallucinations she was having - everything, and we took that with us to an appointment we made with the neurologist, my husband and myself and my MIL. This was the second appointment he had with my MIL after the appointment since he'd made the DX, and since it had been about six months he did another assessment to see if, and how much, she had progressed.
He worked some questions into his examination from the examples we had provided and was able to confirm the information we'd given him by my MIL's answers.
Liesl, I think it's really, really much more difficult in the beginning when you're trying to get your loved one to a Dr., especially to the right Dr., and especially when your Mom may not want to go to start with. But hang in there, and keep trying. Once you get her to the right Doctor/s and find out what type of dementia she may have it will be much easier to deal with and to help your Mom.
Let me know if I can help you in any way.
Hi Blue Eyes - Thanks for the kind and supportive words, I appreciate them. However, we certainly don't see ourselves as saints, by any means. We're just doing what families do for each other, and my MIL and I have always loved each other and had a great relationship.
I have no doubt that the families of the dementia patients very much appreciate the care givers at the assisted living centers and nursing facilities. Even though caring for the patients is a joy, it still requires patience and kindness, and I'm sure the families realize this.
We haven't had any care givers come in to our home yet to help with my MIL but we are going to be arranging for some respite care soon. It's nerve racking just thinking about leaving her with someone we don't know yet, but we know there are many very good care givers, and we just have to find a couple of people who will be excellent matches for her.
Thanks for writing!
I've mentioned in my posts here that we're in the process of looking into respite care. In the meantime one of BILs is coming to visit the middle of this month and he's going to stay with my MIL while my hubby and I have a nice evening out to celebrate my 50th birthday.
We're planning to go out for either lunch or dinner, and then we have tickets to the Arlo Guthrie concert (we're old hippies!).
Because we can't leave my MIL alone there is always one or the other of us here at home, which means we don't get to go out together - so this is a rare and special treat for us. Who would've thought after 13+ years being married we'd be excited again about going out together?! Kinda funny, huh? ;-)
Thanks, BDU. I ended up calling my neuro and leaving a message on Friday. He is slow about returning calls, but he will eventually. I told my mom I wanted her evaluated and she told me that her pdoc has given her memory tests and she always scores perfectly. Maybe it is just that she is 73 years old and her memory is just slipping a bit. What worries me, though, is that her memory is worse than mine, the person who has had around 20 strokes. That can't be right. Gah, I don't know.
I really appreciate your response. Food for thought.
