Recently my husband was diagnosed with moderate/severe Alzheimer's. Is he suffering or is it just me and our grown kids?

My heart goes out to you. It's a long hard journey your undertaking every emotion and some you didn't even know you had will be shaken to it's core and you will be brought to your knees in despair. Support systems dissipate not because of you personally it's human nature to back away from what we fear it happens in illness, widowhood and divorce. Start even in small ways to build a new life for yourself join a support group, take a dance lesson anything that can distract you for a hour a week. And, remember always that this too shall pass. Unimaginable as that may seem.

My advice is a Caregiver's support group. You can learn quite a bit from the group and most caregivers are willing to share their experience and caregiving tips. God bless you as you travel the Alzheimer's maze with your spouse. It will not be easy. Remember to meet him wherever his stage in life is and cherish the precious moments that you have with him.

This discussion seems to have originated just for me. I am the sole caregiver for my husband. I am very uncertain what to do first, so I do very little. I guess getting things in order financially should come first and then starting to clean out the house of useless stuff in advance of a move to a facility. As to handling the different aspects of his dementia, I try to keep abreast and handle each and every incident as it occurs, not always too successfully. I worry that I won't be able to cope as he gets worse.

Just a comment to one of the posts about classes on Alzheimers. Our local Assisted living/Alzheimers facility gives seminars. These Seminars are accredited. Check around and see if maybe a Facility near u does the same think.

Bhjos34...I just read your post. Is the diagnosis for your husband recent also like mine was? I feel like you said, uncertainty on what to do first, so I do very little. There is so much out there. And that is good, and I am thankful, but I can't sit and read all day, nor can any caregiver. The hospital provided sources of help for me, so yesterday I called both a day care adult center and a home visiting agency to inquire and got answers that I can store for use as needed. It did lighten my load a bit, but I feel I don't want to "play all my aces" too soon, so I will hold off for now, but keep them in mind.

I am finding this new role confusing as I don't know if I am handling it correctly, but the warning of self-care for the caregiver is something I do want to keep in mind, not selfishly, but to be able to handle things as they occur.

We had a nightmare of an experience that brought us to the hospital and getting the diagnosis...one that I never want to repeat again...so I need to learn all I can to be the caregiver I need to be. Enough rambling, but it is a blessing to have a place to ramble right now!

LuvR......there is no right or wrong way of doing things because each situation is different. You are doing it your way and you will know when the time comes to start doing things. It's good that you are starting the process though and getting yourself familiar with steps to do. I had a nightmare experience as well with my mom and I wouldn't wish that on anyone. It was worse than my dad having his heart attack and coding in my sister's car on the way to the hospital. Fortunately, ER was able to bring him back. We all just do the best we can at every turn. That's all our loved ones want us to do for them and what I want my son to do for me if he is able (hopefully that won't be for a long time :). Good Luck and God Bless....

I think that one thing that I learned is that I was not able to fix certain things. No matter how I reminded her, wrote it down for her or told her, she would not be able to accept or recall something. I had to accept that she would not remember and that was okay. You have to be able to endure your loved one repeating something 30 times a minute. It's not easy.

While there are many challenges, keep in mind that certain things that are so difficult, often change and give you a break. Constant pacing can be very frustrating for the family, but later they stop doing that. The downside is they may no longer be able to walk.

While there are stages, things can change fast. I would follow the advice above and make plans now. There is no shame in needing help. Even placement is very common. To me, dementia is not so much about someone forgetting things. It's more about unusual and often destructive behavior that is difficult to control. It's also about physical inabilities that require much physical strength to assist the person.

I look forward to seeing you on these boards. Good luck.

LvRLabs2 Thanks for the heads up about getting info from a local day care center. I will drop in this week some time to get an introduction as to what they offer.

A common question here is along the lines of "is it too soon to ___ ?"
If you find yourself wondering that on any particular topic, there's a reason.

Is it too soon to get help at home for ADLs?
Is it too soon to use a daycare/club?
Is it too soon to use a night sitting service?
Is it too soon to talk to the doctor about sleep/insomnia problems?
Is it too soon to treat anxiety and behavioral disorders?
Is it too soon for me to run away and hide under a mountain for a week?
Is it too soon for me to be this exhausted and stressed out?

The fact the question has popped up for you means that it's not too soon and it probably won't be much longer before "too soon" turns into "long overdue".

A lot of very brave and strong caregivers have deluded themselves about reality with the "oh it's got to be too soon for ___". If you feel that way, it's normal. We all do it. But don't get stuck there and end up with a crisis on your hands that forces changes without choices.

I never had time to get on the computer while taking care of my mom so never found this site until after she passed. I did look up some things like what her diagnosis actually was and the medicines she was given. Most of the other things I just adjusted until I found something that worked. Had a known that a site like this existed and there were SI many resources available, I probably would have been on the computer more. Take one day at a time that is all you can do.

This site helps me so much; my mom has Alzheimers and my dad is slowly sliding into dementia. They both have many other medical conditions that add to their care; recently my mom was diagnosed with an abdominal aneurysm and my dad had another bout with heart failure (with a hospital stay of about 4 days)...I know I should be getting additional help but I am so protective of them that I just can't let go right now. I don't trust anyone else to take care of them...but yet I can't spend 24/7 with them. I know I'm just being stubborn, but even tho it is draining me, I just can't . At least not right now...I know this may sound stupid to some people, but I don't trust anyone to take care of them in the way they know, at least for the time that they stilll 'know'...so this is my own personal battle, I know, but I do know deep down that I will have to enlist someone elses' help soon..I have an older brother but he is 'slow' but he does take them to the grocery store and Walgreens and hardware store at nite so that helps ....but all the responsibilities , dr appts, financial/paying bills, etc fall on me....reading other people's feelings and situations help alot, so thank you all for taking a few minutes to read mine...I appreciate it.

God bless you!!!! But plz take care of yourself! Caregiving is very hard on the caregiver!

Please advise me, How Does a Caregiver attend Support Groups When They are The Lone Caregiver?
I read frequently about attending this support group, that support group, etc. My husband screams and shrieks when I leave to go grocery shopping. How does one attend these suggested support groups? Do they leave their Alzheimer suffering spouse home alone? Or does the support group facility provide adult sitting service while caregivers attends seminars and discussion groups? Honestly, I have no idea how I could do this and yet, after 9 years of sole caregiving...I need the support. Also, this week I checked on local facilities as to whether there is short term respite offered. Mostly for information. Every facility I called are not only filled to capacity but has a long wait list! And the minimum stay is 2 weeks for a patient. So...if anyone reading this is looking for an assisted living facility to provide care for a dementia patient while going on vacation...it is nearly impossible. Don't know what people do without an extended family. I'm sunk. Doctor suggested having a caregiver come in once a week to give me a break. Husband said he would spit and throw anyone out that tries coming into our house. Doctor gave up trying to reason and rationalize with husband. And, I must be careful having a weak heart and acid reflux flare-up, etc. So, back to these support facilities...how do all these caregivers attend? Thank you for any suggestions and answers.

GrammyM,
The easiest way is to email the alz.org and ask them whether they gave support group online or by tele-Conferencing. Another way is to email them using their contact us link and ask them questions concerning your love one's condition. I emailed the theaftd organizational website asking them questions on medication and support groups on how to handle my mother-in-law who had frontal temporal dementia. They responded within 3 days with a very detail answer as well as provided me with information on how to join their teleconferencing user group.
I just enlisted in a Telephone conference support group for FTD. There are so many of us that I am on the waiting list. The way it works is the group meets once a month on telephone for 1 to 1 1/2 hour. There are 12 participants and a facilitator. The participants share their experience and ask questions on how they can better care their love one.
I think this may alleviate your concern of leaving your husband alone in the house.

GrammyM - Nobody ever conceives what "for better or worse" might actually entail. It's probably a good thing!

You are going to have to take steps, regardless of what your husband says he will do. My mother threatened to run around naked, pee on the floor, spit, hit, fight. She actually did some of these things, but it was in a facility, not my home thankfully.

You MUST understand that you have to look out for you first, so you are able to be a good caregiver to him. This is not selfishness, it's coping.

You need an in-home assessment to define what your needs are now, and to plan ahead. The doctor is talking out of his hat by saying one day a week. He has no idea what you are really doing. Some older doctors just assume the little woman is going to suck up this effort and it's our job to bear it with a smile.
I say "manure" to that.

Call your area agency on aging. Request an in-home assessment for services. You will need night care so you can sleep. You will need help moving him around and bathing him. If not today, it will be soon so get the train moving.

This is a marathon, not a sprint, so take help, conserve your energy for the long haul, and don't be shy to do what must be done.

I have been going through this with my wife. I cared for her as long as I could and then came to the realization that I was going downhill fast in terms of my own health. Ultimately I said to my sons: "I can't do it anymore!". This was a terribly difficult decision and involved placing my wife in a nursing home. The care there is 100% good; she is getting social interaction and excellent meals. That was nearly a year ago. I have cried buckets and still fight the "guilt trip" thing but, I know it is best. Now I can visit, almost daily, we can go out to church together and to other places. The biggest thing I know is that she is being well cared for. It is still hard.