Posted on 04/05/2010 11:59:18 AM PDT by Loud Mime
You must make time for yourself. If you can, find an adult daycare you can use. There are online support groups, as well as the Alzheimer’s Association. They can help.
Good luck and God bless you and your parents.
Thank you for sharing your experiences, yorkie. That is going to be very helpful as will other things on this thread. Bookmarked for sure.
Do keep us posted.
What a wonderful post! Thank you.
I do take exception to you saying, “I lied!” Because at some level, I don’t think you did lie. At least not in a come-to-Jesus way that you need to repent of. ;)
That, really, was the whole point of what the nurse was telling me from observing how many years of these types of conversations. Just let the person enjoy what they are enjoying and don’t feel bad about playing along. Your mom probably got a smile out of thinking about Glenn being at the store, maybe buying a pair of socks for those gnarly feet of his or picking up some mints to bring her. Who knows? All I know is that this is a much happier way to handle things.
I’m glad you have help and can get out. And the laughing is so good. Anyone who has ever asked, why do people have to suffer toward the end of their lives? I don’t know, but I have seen many times when those last years, weeks, days brought the opportunity to serve, to learn compassion, gratitude, to make things right, to become prepared for the separation death brings.
In my book, God doesn’t waste our tears. This is not to sugarcoat how hard it is to care for someone who, essentially, is living the Long Good-bye. But it is not all for naught.
Research any prescription meds he’s on and make sure the problem isn’t being caused by contraindications or side effects. Such was the case with my FIL, who was also suffering from dementia, but he got much better when we straightened out his meds. That’s all I’ve got for you except prayers.
We’ll do that - - thank you.
I will definitely do that.
I didn’t know we both traveled this road.
Neither did I. It is a very long, treacherous, painful road, isn’t it.
bttt
The bad part ---depending on others to get away from the hurricane.
The first time a tree fell on my mother's BR and we had no electrcity for 3 weeks so it's a good thing we weren't here. We live in "The Piney Woods"...and have big ones in our yard...what's left! LOL!
It has been much easier on me since my mother has been bedridden...I can sleep! Early on I’d wake up and see lights on in the den and she was looking for her brother. She had forgotten my dad (deceased) by then.
Welcome to FR.
One thing that has helped greatly is a family newsletter that I make up on my computer. Having something to read gives them news at their own rate, and is available for the often-repeated questions.
I make a newsletter up every week - - and one just before we travel somewhere.
We also learned to give my Dad coffee (bribery: donut) two hours before we travel anywhere. The coffee has him going to the bathroom before we leave, so we have no messes for hours.
take care of yourself iows...
I moved her to an assisted living facility specifically for dementia/Alzheimer's. Every day I feel guilty that she is not in my home but that is another story. She unfortunately has what they call “word salad” where she knows exactly what she is saying but you can barely understand. However, when she is agitated or angry, it's as plain as day! She was unable to take Aricept (many times the GI side effects are too hard to cope with) but does take the Exelon patch and Namenda. Drs.are recommending combining several of the Alz. drugs because on works on the tangles in the brain and the other on the plaque. Do they work? You don't know, but she is still in the moderate stage after I would say 5 years. This disease kind of stair steps, and we have been on a nice plateau but you are always waiting for the next drop.
Sorry to go on so, I could write a book. Here is what I've learned and some suggestions:
Contact the Alzheimers Association. They have a caregivers class that is wonderful. They also have lists of daycare, and other info like support groups. One of the groups meets at mom's place and we have our families and anyone in the community come. I have seen the group change peoples lives.
In the Dallas area is a place called Friends Place. It is a “daycare” but very highly regarded. They have a website and might know of others nationwide.
If you do end up at any facility, be a presence! I am their worst nightmare.
Medic Alert bracelets and Safe Return bracelets have combined. I did not put a bracelet on mom UNTIL she was in the assisted living facility and had 2 coded secure doors. She has gotten out 3 times, the worst was when another family member thought she was a visitor and held the door for her! She got a half a mile up the road (great shape!) till the nurse caught up. This bracelet has an 800 number that anyone can call. Just google it or tag it off the Alz. Assoc. website.
Locally, we have a teaching hospital which is doing research and has many study groups doing clinical trials. They also encourage children of dementia patients to join a study group and be followed which I have not had the nerve to do. This is a frightening disease. See if your dad qualifies for a clinical trial.
A geriatric specialist is a good idea, and some areas have geriatric managers who oversee someone with a complicated disease/diseases. Many Alz patients are diagnosed and followed by a neurologist. From others in our support group, some internists and primary care physicians just aren't specialized enough. Frontal temporal lobe dementia is usually characterized by more aggressive and volatile behavior. You need to know what you are dealing with.
Sundowners is real! I call after about 5pm the “witching hour”. Drs. think that the brain knows that at that time of day, the person is supposed to be doing something, being busy. It's when the family would be home, dinner would need to be made, etc. Depending on the day, mom gets more confused, sometimes agitated, and will walk and walk, and try to get outside “to get her car”. Distract, try a new activity, or just walk with them.
Yes, you do end up lying. But if it puts their mind to rest, why upset them. You will be onto another subject in a minute. Sometimes mom will tell me she has to get home to mother. Another time, she will look at me at say “my mothers dead isn't she?”Go with the flow.
Alz is a regression in age. To my distress as an only child, my mother does not remember my father who she married at 23. But like I said above, she needs to get home because her mother needs help. I would say she is about 18 to 20 in her mind. That is why end stage Alz is so difficult, where the brain forgets how to swallow or hold the head up like a newborn. That was a shock to see, I don't care how many books you read.
Please, please take care of all the legal work. Make sure you have both power of attorney and medical power of attorney.
If your father was a veteran, there is a benefit for assisted living, home health care and even for a surviving spouse. Check the Dept. of VA website.
Mom and I played card, Crazy Eights. She is not able to do that anymore, so we play different solitaire games together and she does participate and have to work. We also look at family photo albums, and since she moved here started an art class. I continued that by bringing her art teacher there for a weekly private lesson. It is well worth it. She focuses for that hour and really gets into it.
Any simple chores are great or anything charitable that they can participate in and have a sense of purpose and worth. After a while I had to assist with all the chores because she could not really follow directions or find the dryer that she had used for years. That causes frustration and you just have to adapt each day. If they can't do it do it together, which can be hard on you and stressful.
I hope I didn't overwhelm you, obviously mom and I are in the middle of the battle. My prayers are with you and your family. Please seek support for yourself, too. It is both an outlet and a source of info and new ideas and ways to cope.
There are a lot of helpful books which because it's so late I can't remember, but Freepmail me if you want anymore info, names or books or just questions.
Check for depression and any possible medication interactions.
First, to all you Freepers, I am FLOORED by the response to this thread.
It seems that dementia touches the lives of many of us with a heavy hand.
Thanks to all of you, from my heart!
Depression? Yes, it is an element. I believe what has started this bout has been Dad’s inability to write. He has “essential tremors” which kick in when he tries to pen anything - it almost looks like an earthquake graph instead of “Dear Shirley.”
He has been on zoloft for some time.
I try to keep things positive by taking him to places where people know him. The wait staff is always friendly to him, which helps; but he doesn’t get the hugs he wants from them or the kisses (he asks!). So, these trips are a mixed bag.
No, you did not overwhelm me. I read every word.
You mentioned lying, then going with their flow. I have learned the benefits of doing both. When Dad REFUSES to shower, I will tell him that he has a doctor’s appointment or that Jessica, that gorgeous physical therapist, is expecting him. Both are lies, but they motivate him.
One good thing is that Dad has trouble walking - he’s lazy. He could not make it down the block, so I don’t have to worry about his ending up in San Diego. The back side of this is that I know the day approaches that he will be bedridden.
Thanks for your good advice. Yours, and the others on this thread, are opening up new ways of dealing with things.
I was glad to see you post this...we are going through this terrible time with my Father right now...he can't remember what he did 30 minutes ago, but has no problem remembering his childhood or military service ID number...he can still rattle off that number and his social security number without batting an eye...his primary care doctor told us to "bring him back" when he drifted off talking about the old days...that just seemed to get him very frustrated and angry at times...I told my Mom to just go along with him...in a few minutes he forgets what he was talking about anyway...and at 86, why cause him undue frustration or make him angry??...
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