Good suggestion Mary. Paul complained of being sore on his tailbone so I bought one of those square foam cusions with a notch cut our in the back and kept it in his recliner. No more complaints about tailbone. It is probally written above but now is a good time to buy a lift chair. You can get them used for around $300. I am saving mine and using it as a chair in an extra bedroom.
Not sure what number we are on or if this has already been said:
Get a good eldercare attorney and financial planner that you trust to help you with Medicaid planning. The good eldercare attorneys are "certified" eldercare attorneys.
Don't trust airline employees to safely get your LO to the gate at the airport. I tried that last time and while they got him to the gate; they just left him there. The gate changed and luckily someone saw he was confused and helped him. Otherwise??? I had even told the person taking him to the gate that he had Alzheimers and to stay with him. Then, no one to meet him at gate like they were supposed to. Aarrrgggh.
Laundry: Not really all that hard. I do it every day or so. If you think about all you really need to do is get soap that works in cold water for everything. I think your colors don’t fade as fast in it and you only need one kind. It will also help keep the heating bill down too. Takes about 5 minutes to put a load in and start it. Take another 5 minutes to move from the washer to the dryer and about 10 minutes to hang or fold and put away. Just don’t let it overwhelm you is all.
Cooking: You can still get cook books for two at Books-a-million in the cooking lane. But I don’t cook for two. I got one of those vacuum seal machines and I cook a regular meal. I store the extra in them and all I have to do to make supper when I use them is boil water and drop them in the pan. Very little clean up. Just plates and silver on those days.
Joan, I really think this discussion deserves a sticky. We have to keep bringing back to the top when new spouses (spice) join us, because it is packed with the much needed information for the everyday things we must do to prevent frustration, help our spouses with the least difficulty, and understanding of what the different things that happen are to be expected. It is in our own words, and most people agree, it's one of the most helpful discussions. Please consider it!
Another tip: Keep a journal - even if you don't write in it all the time - of your thoughts, what your spouse can do, or has lost the ability to do. The good times and the funny incidents. The visitors who come. The people who offer you assistance.
Later, when you look back, and read some of these things, you will see that you journey has made you stronger and able to face the road ahead. AND, it IS a bumpy road!!!
CommentAuthordeb112958 CommentTimeAug 10th 2009 "ttt for boutoutaluck"
ttt for deb ttting this for me. Thank you 'sister'. I finally found the time to read all five pages and I'd like to say this. If you are reading this end of the thread and haven't read it all the way through, please do so. If you've done your research, if you only have an inkling of a 'feeling', a suspicion, if you're only curious, if you have a dead on dx or whatever of your LO having this ^#^#^%*$# AD/FTD/WHATEVER dementia disease, then read this thread through. Remember as much of it as you can. Bookmark it. There has been much thought, experience, tears, EXPERIENCE, knowledge and love and caring for others put into it.
My hats off to all those who have posted to it above.
I learned something new this week that I haven't seen posted. Don't want to start a new thread so I am placing it here. Social Security informed me when my husband tried to talk to them and then got confused and handed the phone to me, that they can no longer talk to me even when my husband gives his permission. They told me to get a letter from his doctor and bring it to their office and they will keep it on file and then that will give me permission to talk about his social security, etc. A POA or DPOA will not work. They have to have the letter from the doctor. Also, my husband is retired from the Federal Government and they do not recognize POA or DPOA and they sent me a form that I need to complete with a letter from a friend, letter from the nearest relative and a report/letter from his doctor so that I can talk to them and then I also will have control over his pension funds. I explained this to my husband and he has agreed. But, I would have done it even if he hadn't agreed.
I just do not understand why the government will not accept a POA/DPOA when they have been drawn up by an attorney, signed by our spouse and notarized. To me they are far more official and binding than a letter from a doctor.
Time to bring this to the top again for newcomers. So much good info here. One tips that really helped me: something Natsmom posted here early on about "If they don't want to take their meds right now, try again in about 15 minutes." I find that it works not only for meds, but for almost everything.
But the great major difference that this thread and these message boards in general have made in my life was the discovery that there is medicine that can help anger and agitation. No doctor had told me that, I had not encountered it in my reading. I thought that AD patients would eventually be given meds that would conk them out when they got too dangerous, but meanwhile you had to try to live with it. NOT TRUE!
I have a tip that I just learned the hard way today that I wish I would have known a long time ago. There is a 5 year waiting list for my home health care when the insurance is medicare in my town. There might be waiting lists for other places too. Money talks and everything else walks, if you know what I mean. Make sure that isn't the case where you live.
Mary, thanks for bringing this up. I have spent the last 45 minutes reading all the great caregiver tips, but the one that brought tears to my eyes was : I wish I had been kinder in the early stages. It took me too long to "get" on a deep level, that he wasn't doing any of this stuff to be difficult, to make me angry, or drive me crazy. I WISH I HAD LEARNED EARLIER TO LET MY NEED FOR HIM TO STAY NORMAL GO. I wish I had given up trying to control the situation, to find a "cure" or a "solution." With Alzheimer's the only solution is acceptance. I wish I had turned my energy to loving him through it, sooner. When I finally got there, things got a little easier - my life was still chaos and misery, but I didn't take it so hard. It was posted by “beenthere” & it really hit home. I’m now printing that out & putting it where I can see it to remember to try to treat him better.
I wish someone had told me not to plan ahead for anything. When I made reservations on Southwest in March for a trip to TX to visit our daughter and family in May, I did not plan for DH to be so very different. Since the first of April, we have been to two dental appointments, four doctor appointments, and plans for PT, and EMG(a nerve test). Yet, he still complains constantly,is never satisfied with my attention to his needs. I think this is the end of the rope. He has been diagnosed with peripheral neuropathy and has been given prescriptions for pain meds and neurontin. I canceled our reservations to TX. No refund, but we can use the funds within a year. I do not believe he will ever fly again.
maryd, sorry to hear about your cancelled trip. I was fortunate that the last 3 years we went away we flew & DH had no problems, however, that would not be the case this year. Aside from not being able to afford to go anywhere he doesn’t travel well anymore. We drove to our son’s house 7 hours away for Easter weekend & 3 hours after we got there he was asking when we were going home. This will be the first summer we haven’t gone anywhere. I’m sad.
A tip might be to take out cancellation insurance when booking a trip far in advance. I have a continous travel insurance plan with American Express that includes cancellation insurance. Last year I booked our Christmas flight in March, but by December DH was unable to fly. It was a bit of a hassle, but eventually I got a full refund for DH's flight from the insurance company. I needed a medical statement, which our pcp provided: severe decline in the months between booking and travel date.
Just when you think things can't get any worse, they do. Yesterday, the director of Bob's senior morning program called and expressed concern about DH's behavior. He no longer takes part in activities, yelled at a volunteer and apparently takes up time talking about his aches and pains and that I don't believer him. He was gently dis invited from attending this 3 morning a week program We have been to 3 doctors, 2 dental appointments and much testing for his pins and needles in his hands, and feet and a $4000 dental bridge in the last four weeks. Our neuro wants him to see psychiatrist which we will in three weeks. He is to have an EMG and PT on Thursday. He thinks he can't do any exercise or even go for ice cream with our daughter. He just wants me, sitting in the same room listening to him complain. It goes on and on.
maryd, I hear ya sista! My DH is getting more & more dependent on me. My DH wouldn’t even go to the day care program here. Though it was a nursing home & thought everyone was sick. Last week he didn’t want to go out for ice cream with our friend from church who he usually is happy to go with. She stayed with him at our house while I went to the VA to try to get some paperwork taken care of. I can see that soon he won’t want me to leave at all. That will not be good.
OH how funny! I just read the whole 5 pages and then saw your note when I had finished Nikki, oh you sly thing!
For me, the one that really stood out, is on this page, by Mary H. ALL OF IT IS SO GOOD! but this is the one I had actually had to face up to today. STOP FREAKING OUT AT HIM< even occasionally, and try to be kinder.
I ended up telling him today, that I know it is not his fault, that I was going to try much harder. I think he knew what I meant, today seems to be a bit clearer day for him.
This will likely be the last chance I get to be kind, and have a semblance of love from him, he seems to be changing real quick.
I will definetely bookmark this very invaluable information.
I noticed we have several newbies here. Welcome! Joan's place saved my sanity and helped me through four very difficult years. The tips discussed and listed here will make your time as a caregiver spouse much easier, and allow you to manage your life easier while your spouse ceases to remember, ceases to do things he/she could do yesterday, refuses to dress/undress, shower, etc., wants to roam, sundowning, etc.
The journey is longer for some than for others. But the end of the road is the same for us all. We lose the other half of ourselves, one day at a time until they are gone from us. These tips will help you adjust (you have to do the adjusting - they can't because they are controlled by the wires disconnecting in their brains) to the different "occasions" which occur in this horrendous disease. All we can do is to try to make their last years as happy and pleasant for them and for us as possible. (They react to our emotions - they will mirror them - so if we are mad, they will get mad; if we show frustration, so will they; if we smile, so will they. We will be able to rebuild our lives afterwards. They won't. Some of us were fortunate to have some fun and happy memories during the decline (as well as horror stories for the things that went wrong!). Others are not that lucky. Rage and ranting and violence cuts short some of spouses' (spice) ability to be cared for at home. NEVER feel guilty if/when they have to be placed. You have done the best you can.
Please remember, you have to come out of this with your health - which means that you need to find respite - leaving your spouse with loved ones, adult day care, or hire an agency beginning with two mornings a week - don't think that because no one can take as good of care of them as you, that you can't leave them (think of leaving your child at nursery school) - they survive and you will too....respite kept me going until the end.
These caregiver tips WORK. Joan's place is a lifesaver for spice caregivers....and I've made friends here who have become family, and I'm keeping them for the rest of my life.
Good luck and good health to all of you who have yet to get to the end of the road.
I am fairly new to this and have spent about six weeks reading the earlier posts. I have learned so much but the best thing has been "treat him with kindness"!!!! I am ashamed to say that the past year I was out of patience and gritted my teeth 24 hrs a day. I have learned to like him again in spite of the problems and in turn he has become more gentle, laughs with me at the fiascos that happen, and frets less over what he can or cannot do anymore. In being kind to him I am also benefitting greatly. Please treat your spouse with dignity and dig deep for your sense of humor. You people are wonderful in my book because I think if I hadn't found this site our marriage of 50+ years would have ended in disaster. Jan
Thank you Mary, I look at Dh when he falls asleep in the chair, he looks so calm and I think... How could I not love and care for him, it's not his fault he has AZ..he has always put me and the kids first...now it's time for me to put him first...so I'll remember all you said Mary, and hope I can keep my patience and health to carry this through...
I wish that changing yucky poopy diapers really was the worst thing about this caregiving.....lol....I really thought I'd never get over that part and surely nothing could be worse!
For those of you who are new here, and haven't read this entire discussion, these tips got hundreds of us (at least) over some rough patches. These tips were invaluable, and made our lives as caregivers so much easier - and we were able to understand better what we were facing. I hope that you will take the time to read them and make notes of things that you may need to do in the future.
We survived and you will too....hugs to all of you who are on this terrible journey as caregivers to Alzheimer's spice.
It has been over a year since this has been brought to the top for new readers here. This is one of the most helpful sources of information for caregiving. Those of you who have not read it, please do so.
Just remember that you can get through this - and if a few of this tips makes your life easier, then it has served its purpose! Hugs to all of you!
Thanks for brining this forward. It has been an eye opener for me as I am seeing more of his changes that I didn't understand were part if the disease. I now know why he is doing certain things and how to take care of him better. More understanding on my part.
How wonderful that you heard from York! He was such a huge help to me when I first joined here and I think of him often with fondness. Please send a hello and a hug from me the next time you talk with him Nora ♥
This was a great help for me!! I read every bit of it and kept saying" oh! That is what is happening and that is how to handle it" thank you so much for bringing it back and every " newbie should take the time to read it. I found the answer to so many things he was doing that I wasn't sure was part of the Dementia. It makes it so much easier for me and for him. Nothing is really easy about his disease but this helped!! Hugs
It has been almost a year since this was brought to the top. Anyone who has joined Joan's since then can learn a lot by just reading this entire discussion. It is one of the best ones I've ever encountered!
Mary, good idea bringing this up for some of the new members. I remember reading this from beginning to end when I first came here in 2011, and it was so very helpful.
Well worth reading. I read it all from beginning to end sometime in late 2012 after I joined this group. I read it all again yesterday. A lot of suggestions are still good even though DH is now in late stage 7.
Whew - I really needed this today - last 24 hours have been tough so I needed this website. In rereading this series of posts PatB's posting from July 2008 really hit the spot for me:
50. Your new mantra should be:
I didn't cause it. I can't fix it. I am doing the best that I can.
And here's the helpful caregiver tip I would give anyone else at the beginning which others have said too but it bears repeating - Support is essential to survival. Find it and find it fast and make sure it's someone who encourages, understands, and doesn't criticize. No one knows what it's really like unless they've been there.