Good morning, I am still finding my way around this site, not so successfully! I am Dancyn, first posted a couple of weeks ago. I have trouble locating my replies, which have been very helpful, but I cannot find them again. I am a reasonably literate computer user!!, but this is befuddling me. I wanted to thank the people who replied so quickly. I am in need of experienced spouses caring for husbands or wives with Alzheimers....I am having more good days than bad, and I think we are in the beginning of this journey, which depresses me greatly. Any help with the site, or with the situation will be gratefully received.
I am not dealing with a spouse but with my Mom (and my Dad in the past). Just know that it is very difficult to wrap your mind around this diagnosis and find our new normal but that will come in time. Be sure to get help. You can not do it alone and you can not have too much help. Stay in the moment, enjoy the moments you can, and try not to project too much into the future and wish for what might have been. Keep your sense of humor. It will serve you well. Find places to vent, get advice, and support! Please take care of yourself, physically, emotionally, and spiritually. This will give you the balance you need to take care of your loved ones... which will be a benefit to you both
The Following User Says Thank You to Gabriel For This Useful Post: dancyn (07-25-2011)
I think the best way may be to follow the links in the email. Once you write in a thread, this site sends a link to your email address about people who reply there. However, if you don't click on it once, it will not show again until you write again... At least it helps. I deleted some of them after I read it to get rid of old links.
I only have the experience of take care of my FIL. Not a spouse.
It is hard to do it as a spouse and there are many private issues as well. It is difficult if you don't hire part-time caregiver or try the adult day care center. Get help so you can have a break.
Last edited by ninamarc; 07-24-2011 at 12:13 PM.
The Following User Says Thank You to ninamarc For This Useful Post: dancyn (07-25-2011)
My wife was 52 when she was diagnosed with Pick's Dementia 4 years ago. Only 4 years, but it seems like a lifetime ago. She passed away just over 2 years ago. Unlike Alz, Pick's is a frontotemporal lobe dementia that progresses rapidly, so I don't have the exact situation that you do, but I have a lifetime (it seems) of caregiving experience. So I'll be glad to give any input that I can.
It seems like an overwhelming situation, I'm sure. But you WILL get through it. And if you are like me, you will forget so much of the stressful, painful things that you are / will be dealing with.
Please keep posting... you will get a wealth of support and input from these wonderful folks. They were a lifeline for me.
I'll keep checking back on you. Kenny
The Following User Says Thank You to kenbob71 For This Useful Post: dancyn (07-25-2011)
Ken...didn't we already give you a tiara...you want a medal and a promotion too? Well. Ok..you get it!!
Dancyn...get your ducks in a row now. Get legal things in order. Don't hide what his diagnosis is. It touches many many more people than you expect.
As the others have said....you cannot do this on your own. Scope out what is available in your area before you need it. Find a doctor who listens to you. You will find that is one of the most important things. If you find he changes in any way, call the doctor. Do not wait til his next scheduled appointment. Then take it day by day and as new problems arise, ask...there are so many here who have been in every stage that is ahead of you.
Remember to enjoy the sweet moments. Those are the ones that you will hold dear.
I bookmarked the site and just click on it to open to this page on Alzheimer's.
The Following User Says Thank You to meg1230 For This Useful Post: dancyn (07-25-2011)
So many thanks, Ken, for your message, I need all the help I can get! And congratulations on your senior status! Today is one of those days that I don't know how I can do this, losing a spouse in terms of companionship and conversation and the loss of shared memories makes me sad and then angry. I am a nurse and my husband thinks I ought to be doing a better job, he is a clergyman and I think, while I know better, that he ought to be more understanding. Our children see him only in snapshots and don't really know how bad it is getting. As finances will be an issue, I keep putting off outside care thinking it will be a more acute need later on. And I think the journey will be very long, as he is healthy in all other ways, in spite of an approaching 80th birthday. thank you for listening, and for caring.
Remember. Above all else you are human. You are being forced to go into a situation that you didn't ask for or ever imagine. Of course you are angry. And sad. And whatever other emotion you can come up with. That is part of the grieving process that you are already into.
I'd had training in grief lay counseling, and had led a few grief groups. But never realized the symptoms in myself. Yes, your husband is still with you in body. But you already see so much slipping away that no one else sees, or wants to admit. By the time my wife died, I'd pretty much already grieved about as much as I could. Then three days later, my mom suddenly passed away. I had NO emotions left for that. And two years later, still not much.
There is no owner's manual to tell you how to do this. And no one on the outside (even your children) really know what you are going through. i'm sure you shield them from a lot. So please allow yourself the grace to just face this one day at a time... as best you can. You will make some mistakes along the way. Lord knows I did. But you have to forgive yourself every morning before you get up, and every day when you finally go to bed.
Yes, it is lonely. Yes, it is sad. Yes, it is frustrating and overwhelming. But I"m here to tell you... You are SO much stronger than you ever knew you could be.
There's that saying that God doesn't more on you than you can handle. Some days I really thought that He'd overestimated my abilities. But (as trite as this sounds to some folks) just put your faith on the line and He will get you through it.
Don't let anyone make you feel guilty or wrong. If someone thinks you are not handling things in the right way, invite them to come stay for a couple of weeks while you go on a cruise. I did that with the in-laws. After that, they "got it"!
Please keep posting. And I'll keep coming back to check on you. Look into Medicaid to start helping you financially. Check with your local Alzheimer's Assn. They probably have a lot of resources that you never even thought about. And they can start helping you down the right paths.
And start now, while things are fairly calm. The more you can do now to prepare, the better off you will be.
Also, don't be afraid to bring your family in to help. Don't try this alone!
Check around to see if there is a Caregiver's Group somewhere close. I found one at a church nearby, and it was a lifesaver for me. I still go from time to time. And have actually been able to start working with a guy who's wife has Huntington's Disease. (Wow. And I thought I had it bad)
I am new to this board also, so don't feel bad about not knowing your way around. I don't either. My husband was was diagnosed with Alz about 5 years ago at age 53. I am still in the working world, so I have a caregiver come in during the day, and I take the evening and weekend shifts. He is still mobile, so I don't have to deal with moving him around. He has atypical Alz in that it started on the opposite side of his brain and has affected his speech very early on. He very rarely says anything coherant anymore. Someone else replied that you have to keep your sense of humor, and I second that motion! Prayer and laughter are what keep me going! Good luck to you!
KenBob's advice is so useful, I found myself rereading it a few times. And of course, I've been exactly where Soonerfan is now. Interestingly, it was also speech that was affected with DH too. I've read that this often happens with the early onset cases, and that in some respects it appears to attack different parts of the brain than the typical Alzheimers. Ultimately we all end up in the same place though.
The increasing loneliness and isolation is made worse by the loss of sleep and fear about the future. It just builds and builds. I relate to KenBob's description of the process. By the time DH was admitted into a NH, I was desperate. DH's day care arrangements were no longer able to manage him, I was getting about three hours of intermittent sleep, since DH catnaped instead of sleeping. He was incontinent (destroying the rugs and furniture), and I was missing so much work that I was afraid it would affect my ability to support everyone. He was constantly anxious, and needed someone with him every minute.
I was glad that I had done so much of the groundwork in the year or two before we reached that point. I generally knew what to do. I had already collected all the paperwork for the lawyer who assisted me with the Medicaid application, and knew all of my rights (good thing, since the NH admissions office wasn't 100% truthful when advising me). We were on some NH waiting lists although I actually knew that the lists were so long that I didn't expect a call for months. I knew that we could "pass" if his name came up, but I just wanted to be ready. I had talked to our family doctor, who was prepared to admit DH to a hospital for tests...so that he would be eligible on a priority basis for the next open bed at the NH. Our doctor gave me advice about how to handle the hospital and how the tests would be scheduled, to prevent the hospital from trying to discharge him before a placement had been found.
Even with all the preparation, there were surprises. I felt unprepared at least a dozen times each day, despite knowing that the NH was going to be inevitable.
I remember KenBob letting me know that I had to give it time. It was at least six months before I started to sleep again most nights after DH was in the NH.
It broke my heart, but I saw that DH did better in a NH with experienced 24-hour caregivers. His world in the NH was better than his world sitting in the house with one or two exhausted caregivers. He has the freedom of his ward, an activities director who tries her best with these Stage 7 patients, aides who tolerate his constant pacing and handle his personal care well, and nurses who monitor his health and medications. Yes, he went through an angry stage and made it clear that he wanted to leave. (He even managed to follow a maintenance man outside through two sets of locked doors once...but then he couldn't understand what an elevator was, so it was clear that he was a patient...). It took about 6 months before he fully settled into the NH.
As his illness has progressed even further, the routines of his ward give him a safety that I could not provide at home. I am still learning. It's difficult to find someone else sleeping in his bed since the patients don't know the meaning of "mine" and "yours." It's hard to see him stand nose-to-nose to someone, since the patients don't understand "personal space." I went though a stage when some of the elderly women insisted DH was their husband.
KenBob is absolutely correct. You learn that you are stronger than you ever thought possible. You will face many challenges. All you can do is to try your best, and let others help you.
Last edited by Beginning; 07-25-2011 at 04:47 PM.
The Following 2 Users Say Thank You to Beginning For This Useful Post: dancyn (10-09-2011), Soonerfan927 (07-25-2011)