No End in Sight
Apr 4 2012 in Amy's Blog by tiredamy2007
Hey everyone
Sorry I haven’t been on here much lately. I have been so busy. Where do I begin.
My dad was diagnosed at the end of March with Alzheimer’s. This was a big shock to me because it was all the sudden and he couldn’t understand very many things. He couldn’t reason and started not following what you are saying. I was very worried so we did a CT and a sonogram to see if he had a stroke because he was having drooling and everything.
The test showed narrowing of the arteries but no stroke. We were happy with that. But then it didn’t improve so we did all the tests to see if he has Alzheimers and he didn’t do well on them.
So now I am caring for both parents with dementia. This is so hard because they are both hard to understand. You try to do the best you can and then it isn’t good because they don’t like that they can’t do it themselves anymore. One huge problem with Dad is that he can’t remember he hasn’t taken a shower and refuses to take one even for a week or more. He is a big guy so I can’t like just give him one. I worry about this because he is a bad diabetic and i worried about skin breakdown and getting sores from the dirt.
My mom continues to need extra help. She needs help to remember to do very simple things. I have actually had to put together a bag like a diaper bag you would have for a child so that I can carry the things that make them happy and content and also to keep them clean.
One thing that is not helping is that I am still struggling with my health. I have been having chest pain and terrible anxiety. I wish my health would improve so that I can do better in caring for them. My sister is still off of work with her knee. She was almost ready to go back and then she fell and did damage so I am stilling helping her all the time. My nephew is having a terrible time right now. He has autism and ADHD and is having a hard time knowing how to do things. I take care of him five days a week.
I have two questions, 1. What helps people with dementia to keep their mind a little sharp? and 2. How do you help people that sun down?
Hope everyone has a blessed day.
Jan said on April 4, 2012
God bless you, tiredamy! You certainly have your hands full. I’m worried for you most of all, though. I can feel the stress in your post. Your body is telling you that you are overwhelmed. Chest pains are nothing to fool around with.
Are there any local agencies you can contact for resources on Alzheimer’s? I know our local chapter has some great benefits, including the opportunity to get respite care for a certain number of hours each year.
Is there anyone else in your family who could help lighten your load?
How about neighbors, friends, a church group?
Speak to your Dad’s doctor to find out if there are any medications that might help slow the progression of the dementia.
Locate a local Alzheimer’s support group. It will be an amazing relief for you.
Please don’t hesitate for ONE MINUTE LONGER to ask for help. You need it, you deserve it, you’re entitled to it.
Keep us posted, and take care of YOU. If you don’t, you won’t be able to take care of anyone else. We’re rooting for you!
Denise said on April 5, 2012
Hi Amy–I’m so sorry! So much for you to manage!
A few suggestions:
The Alzheimer’s Association has a hotline; you can call (24/7) any time with any questions or problems you’re having: 1.800.272.3900
Alzheimer’s Foundation of America has social workers you can speak with when you’re struggling; you can call 866.AFA.8484 between 9 am. and 5 p.m. ET.
Here’s a few articles with tips to manage sundowning:
Mayo Clinic: http://www.mayoclinic.com/health/sundowning/HQ01463
Alzheimer’s Association: http://www.alz.org/living_with_alzheimers_sleeplessness_and_sundowning.asp
Can you remind if a nurse comes to see your dad? If you do, ask her for suggestions on keeping your dad clean.
I know money is tight, but if you can squeeze out some to hire a home health aide for just a few hours just to train you on how to keep your dad clean, that may be a good investment. You can call a local agency and ask for hourly rates and if they could help you with a training session.
Keep us posted when you can.
Denise said on April 5, 2012
Hi Amy–I forgot one last thing:
Claire Day is our dementia care expert and joins me once a month on the talk show. You find our shows (and read recaps and listen to them) here: http://www.caregiving.com/?s=claire+day+your+caregiving+journey
You also can send me questions you’d like Claire to answer. She joins me the fourth Tuesday of every month at 11:30 a.m. ET (10:30 a.m. CT).
And, we’re also so glad to hear from you, so it’s good that you keep us posted as you can.
Bette said on April 5, 2012
Hi Amy,
I’m so sorry about all that you are managing and maintaining. I understand about the sundowning. I experience this with my mother who has dementia. I’m so glad you wrote about it. The resources others have been sharing will be so helpful.
Denise advised me a while back to write about the tough moments/days – if only just a few sentences. I’ll pass that advice on to you about the sundowning. If there is a behavior that is upsetting to you and if you feel comfortable, please tell us about it. For me, the release in writing has been amazing.
It sounds as though you may be able to talk with your sister too.
Please take care of yourself Amy. You do so much for so many, just don’t forget how important you are. Add strength to yours through remembering you need help physically too.
Thinking of you and your family. Please take care.
ejourneys said on April 5, 2012
Hi, Amy — I am so sorry you are faced with so much. Please seek whatever help you can find, for the sake of your own health. And bless you for the Herculean work that you are doing. As Bette says, don’t forget how important you are. Please cherish and take care of yourself, however you can.
In answer to your first question, a study showed that reading and arithmetic exercises help improve cognitive function in people with dementia:
http://alzheimers.org.uk/site/scripts/news_article.php?newsID=1171
The Memory Practice website includes some exercises and information:
http://www.thememorypractice.com/?p=1165
Another Alzheimer’s site is the UK-based Alzheimer’s Disease International, which helps caregivers of people with Alzheimer’s Disease and other dementias:
http://www.alz.co.uk/
I’ve posted a lot of links in the National Resources group
http://www.caregiving.com/groups/national-resources/
They include links for caregiver support and community assistance. I hope some can get you the help you need.