Two things I learned the hard way, are survival tactics the Caregiver needs to do right from the beginning of their journey on the Dementia Road. By my own experience, I learned I couldn’t be-all and do-all for my DH, our daughter, the household, and me. There aren’t enough hours in the day, you don’t have enough hands, and you are a victim of what’s happening too---collateral damage.
I wasn’t on the Dementia Road yet when I learned the first thing ---DO NOT PUT YOURSELF LAST---YOU COUNT TOO. DH was Dxd with a Mental Illness and I became a Caregiver. I studied up on his Illness, counselled with him hours on end to fight his confusion; helped our daughter with homework, played games with her; cooked, cleaned, and did the bills. I would crash for a few/couple hours , get up, and repeat. NOTICE: nowhere in tha t list do you see: had a cup-o-tea; read a book; took a walk. The Caregiver must set aside time for themselves; take time for themselves. Burnout, depression, and illness are sure things if you don’t, and they will prevent you from Caregiving well. They can even kill you.
The second thing the Caregiver can do to help themselves survive this journey, is to dump the ego—you cannot do everything yourself. Accept that and get help in. You have to advocate for your LO, do paperwork, Dr. Appts, deal with bahaviors, etc., etc., etc. Anyone can wash dishes, mop floors, and an in-home-helper can shower your LO, or just keep him/her company so you can have a break. You’ll stll be in charge; but you will be less stressed and tired. Getting help in early also gets your LO adjusted to receiving help from someone beside you, averting difficulties later.
Taking care of yourself and getting help in can make a huge difference in how well you survive to have a journey to a life afterwards.

Lorrie--your journey's just starting. There's a wealth of info on this site to help you deal with anything that you run into, but the key thing to hang onto is that if you don't take care of yourself---who will there be to take care of your DH? The earlier you get even a little help in and get your DH used to being helped by others besides you, the easier it vwill be when that has to happen because of his declne,or if you were hurt or ill. Take respite time whenever you can arramnge it--a couple hours , a few days --anything that recharges you. The moreyou can avoidburnout, depression, etc., the better you'll come through.

I have been dealing with this ef*(*&e disease now, looking back at the earlier signs, for 8 years. It was 2009 we got the formal DX. I have been doing ok for the most part until last year when I did not get a break, no one in the family, save one brother in law, took anytime to help let alone volunteer! Too busy with their own summer trips etc...Finally in Sept, oddly on the 11th, it all came crashing in starting with opthalmic migraines...have had only the one attack but then the anxiety attacks, panic attacks began and now am taking 1mg of valium prn. And last week I started with in home help..It was my cousin's wife who called the lady who is in charge of her mother's care and has been for 3+ years...this gal called saying L had called saying I needed help...can she come see how she can help...we met on New Year's Day and then last week began with 3 days a week at 4 hours per day..It is going to run about 1K a month and right now it is under the table until I see how well it works and what adjustments we may need to make and then I'll talk to the CPA as I want to be able to write off his care plus I don't want to be on the wrong side of the IRS..I first need to navigate these new waters.
I can tell you that one of the gals who is 33, is a fabulous cook..I thaw out the meat before hand and unless they want to try something, she just makes it up and we have an evening meal for at least 2 days so I freeze up half...just having to warm up an already good evening meal and not have to stop to prep it is a godsend. and they will hoover, dust, help sort cabinets or anything else save windows and moving furniture... The only drawback is those 4 hours go so fast..I may well need more hours as LO's dementia gets worse. And even if I don't get to go on any trips to Iceland or anywhere else because of the cost of in home. I will still have less stress now and I can deal with the myriad of errands so much easier.

Here's another way I survived the journey toward the future.

At the time of Dx we were told VaD was a ”Terminal” condition. DH wasn’t affected by the information. Of course, he considered al their tests and words a bunch of BS. I was always thankful he was at least very god about taking the meds they prescribed. He did know they were helping.
“Terminal” was a big deal for me. It was another horrific piece of the Hell we’d fallen into. I had to get a handle on it, if I was to look after him—see him through. It took me sometime to respond to the information rather than react. My immediate reaction was to push the knowledge away—refuse it—bury it –ignore it. That didn’t last long. I knew I had to gain a perception which would get me out of shock and panic mode and back into my functional caretaking mode. By allowing it to float in the back of my mind, or live in the closet I gave it there, I was able to return to doing what had to be done daily while my subconscious dealt with “Terminal”.
After a while, whenever I could grab a little time, I began making files and collecting information. A file containing lists of relatives and the proper spelling of their names—divided into those who’d already passed and those yet surviving. Another file listing hymns and songs we liked. A folder of recipes of special foods we liked. Another folder of quotations, anecdotes, and other meaningful writings. I also roughed out a Do List for that time to come. All done in bits and pieces, over time, slowly I had built the pieces I’d need to assemble his Memorial Service—without panic, on my terms, honoring him. The power of “Terminal” had become just another fact to be dealt with and finished, no longer a damaging power over me/us.

Wolf,
You have a way with words and good advice too.Thank you

Like Lois, I married young. I went from my parents home, to college, to being married. I never lived alone until Dave died. Not only did I lose my partner, my lover, and my everything, but two years earlier I lost my daughter (to Toxic Shock Syndrome brought on by a strep infection while on a caregiver break) and I lost my best friend since the third grade to a heart attack. Of course, our pets (except one) died before he did too. Lady, my 16 year old German Shepherd, lived another four months before she died. Then I got to learn what being alone truly meant. All of the stress, along with working out the finances, knowing he would die, and trying to make his last years comfortable took a toll on me.

Since Dave was diagnosed (four and a half years before he died) I have changed - both in my thinking, feeling and way of coping. I'm not the same Mary I was then. I am more compassionate, understanding, and I like to take time to smell the roses. Before I just acknowledged them and appreciated their beauty and smell, but now I take my time to really enjoy them! I won't let myself get into a stressful situation now. I know I am still tender, and have walls to protect myself. I no longer empathize, but sympathize. I try to help those I can who have a family member who has AD. That will always be a part of me now. Not to the extent Lois is doing (I really admire you for having a group), but mainly with one on ones when needed. I don't laugh and kid as much as I used to, though I love a good joke or cartoon. I'm more retrospective. I've given myself permission to spoil myself - like this coming weekend. I know that there is something in the future for me, but so far the door is still closed. When it opens, I'll go through it and see where it leads me.

For a while after he died, I couldn't stand to stay in the house except to eat, sleep, and do laundry. I stayed on the go, and took frequent trips. That lasted over a year. Even with the new furniture in the dining room where Dave spent the last year of his life (I converted it into his bedroom with his hospital bed and recliner just a few feet from me in the den), and I also bought a new bedroom set. Now, after a year and a half, I find I am once more comfortable in the house. I debated selling it and moving to Georgetown, or Florida, and once I retire, I still might....I like the activities that they plan in these communities. (I know that I can go to activities here, but with working, I am too tired.) I'll check them out later. I'm no longer in a hurry. I just want to maintain my health, enjoy my friends, and thank God for all he has given me.

Thank you again, Joan, for creating this site and giving us a place to meet, ask questions, vent, and make lifelong friends who have become family.

I'm about 18 months past my husband's death. I didn't and haven't had it as hard as most on this site. He was compliant about 90 percent of the time, although he yelled a lot. My daughter lived with us (and continues to live with me) and when I needed it, I found a wonderful strong young man named Andrew as an aide who couldn't stand being idle, so he spent his quiet time at our house doing the dishes and cleaning the house. Although L. was fairly seriously demented for five years or so before his death, he only was in a nursing home for a month after he'd broken a hip, before he died.

I had always known I'd move from our big house after he died, and even while he was bedridden (for a year) I was disposing of books and other things. Last year, after our first Christmas without him, we started downsizing for real, and were lucky to sell the house quickly last June, and to find a tiny house that suits us perfectly in a retirement community in Maine, which we had visited for many summers. The downsizing was very tough and arduous, but we did it! and are now relaxing. There IS an "after" as Mary says.

Before my husband was, a very close friend was diagnosed with dementia. Several of us got together and helped her produce the autobiography she had written when her wits were still strong. Got lots of her old photographs and put it together into a book. She carried a copy of that book with her everywhere, even as she progressed from being in her own apartment, to assisted living, to nursing home. She said it "gave me my life back".

So Mary's comment about making scrapbooks of your life is a good one, and something to do in those hours and days when you are housebound. AFTER, may you be as productive and happy as Lois and Mary. They are my role models!

Well, I'm glad you asked! Because I had sent his mother a note in June, before we moved, but MISSED HER REPLY! So having found it, I have now sent another note and maybe will have further info before too long. In June, at least, he was doing well. She wrote:
------------
I am just back from Florida where Andrew is living and working. He seems to be doing well (knock on wood) has a girlfriend (not sure she is right for him but not for me to decide) she is older than he but well educated. I think he may be drinking a little too much but not so much more than guys his age. No drugs no Methodone
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I do hope this is still the case. He was such a lifesaver for us!!

Joe died in August last year. I never came back here to change my name or put a star after it, but I'm also one of the widows. They have been after me to come into this thread and write.

I've watched a lot of placements over the years, on this forum and others. They almost always happen during some kind of a crisis. Joe's placement was no different. He took off after 3 or 4 days of me trying to keep him in the house. He got away from me and I called the police, and later that night the hotline for the Alzheimer's Association. The next morning I called the doctor, as I'd been told to do, and dialed 911 to follow the doctor's instructions. The ER nurse made the decision that he was not coming home with me again because it wasn't safe for me or for him. I had 3 days to find a good nursing home and found a very good one that could take him and keep him permanently. So there were 7 days of worry and work until I was exhausted and then, suddenly nothing to do. I date my mourning from the evening I found myself at home alone. Joe was at the nursing home. My daughter who had come to help me deal with the chaos was on her way home to her own family and her own life. And I was home, alone.

Now what?

First of all I needed to get some rest. I literally was so exhausted my eyes hurt. I tried to sleep but doing that through the night wasn't easy then, and frankly not always now more than two years later. I took naps. I stayed home and just sat. That went on for two weeks and then I began to feel a bit better physically. For the first few months I went to see Joe every other day. I never stayed long. He would get agitated after about 20 minutes and I knew it was better all around if I left, so I did. What do you do when the life you had has been gone for years and you don't have a large family to take up the slack. I also didn't have any real friends. We had moved across county so many times the only friends I had left were long distance friends. We hadn't been in our retirement home long before Joe's illness closed any social life down here.

So I was rebuilding from scratch. I have great neighbors. People who I didn't know all that well, and in some cases not at all, helped me when Joe was home. I would not have survived without them. My first steps at rebuilding was a local bible study group. They met in each others homes on Tuesday nights. I don't see well enough to drive at night, but my community has street lights although the town around me does not. I can drive within my community, so I started going to that group. And slowly I got involved with some of the other women in the local community. I went to lunch with them mostly. After about a year I was feeling like a widow, more or less, and I asked if I could join the "single's group" which is mostly widows, but includes some women who have never married. That group meets for lunch 4 times a year. I bought a sewing machine. I've sewed for 60 years, but hadn't done much of anything for a decade. I began to look at the unfinished projects in the house, mostly hand quilting and worked on those. I began to machine quilt too. I upgraded the sewing machine and I've gotten very busy with the online quilting world.

I began to blog. Most of my blogs are about my AFTER. Most are about quilting. But I did address grief, and what I'd learned from being a caregiver for someone with Vascular Dementia. My blog is:

http://walkinglifespathagain.blogspot.com/

I'd love it if you came to visit.

I called it Walking Life's Path Again because that is what I am doing now, in the AFTER. I'm much further along in the grief path than I should be after only 5 months, but I was grieving a lot earlier than that. I started when I found myself alone in my house with nothing that had to be done because Joe was living somewhere else now. I grieved harder when he got so sick that he no longer knew that someone was standing next to his bed. At that point I could no longer even pretend that he was still there. And I'm further along because I recognized that grieving has tasks, just as caregiving does, and I did the tasks. I got help through Hospice and talked to a counselor. I journaled. I read books and journaled about what I had read. I asked myself hard questions and I answered them. I dealt with the grief from 66 years earlier when my father died that had never been resolved.

And now I'm in a better place. I'm in the AFTER. The grief is not over. My anniversary is coming up in less than 2 weeks, and I'm stressing a bit, but I will be OK. I KNOW I will be OK!

Good for you, Starling, good for you! Welcome to the world of AFTER.

I had 'grieved' so much over 10 yrs of CG for DH that when he died, I already had most of it over with. He'd been in a facility by that time so I was used to being alone in the house. My children are nearby, that has been a comfort, but I also have my own little life and I'm grateful for that.

Starling, I am so glad you posted, but I am so sorry for your loss. Glad to know you are navigating the world of AFTER and surviving. When I first joined this forum in despair after a crisis, your wisdom along with the other originals was educational. sometimes difficult to hear but always welcome as I began to navigate the life with a husband with dementia. And based on one of my first posts, you diagnosed my husband's rash as scabies, even when the psych hospital docs denied it for weeks! Horrible experience for both of us but at least we had a name for the horrible itching and a dr who believed me and got us treatment!

Ypu will always hold a special place in my heart.

starling good to hear from you and that you are a survivor of the after. keep on trucking, you seem to know what you want now.
divvi

I'm at the very first steps along this road but I'll admit that "After" has been on my mind. Will I be too old, too broke, too depleted to enjoy whatever is left of my life? After reading this discussion, I'm starting to realize that I have a choice. I can take action now that will help me then. I'm feeling a little hope here, folks, and hope has been in very short supply lately. Thank you, thank you, thank you.

The thing about journeys to anywhere is what the destination is, what you're taking with you, and how your surroundings are. In the physical world that's a lot easier than in the emotional and the mental world.

People don't take journeys without a purpose. If there is no purpose no one is talking about a journey.

It's the same with athletes. Those that set goals and are willing to endure pain and long effort get better at their sport. It's the same with many things. Most people who take tests they prepared for tend to pass those tests. Most people who see their efforts at their job are inadequate tend to make themselves buckle down and do better.

In the field of emotional health this type of comparison doesn't come up - but it should. Let me explain.

Lets say I went to a therapist/psychologist/psychiatrist to get help. I would be there because I want to feel better and I'm looking for help to do it. The first thing they do is get me relaxed, find out what's going on in my life, find out how I feel about it, find out what my worries are, and try and help me see things that they understand I need to work through. Fair enough?

There's the plan, the test, the sports challenge in simple terms. If I'm not seeing someone to help me and I'm not trying to help myself through those things then no one is.

Do you know what else they will do? They will try to determine what your normal is. In other words they will try to figure out roughly how screwed up you were before any of this happened. They do that because they need a frame of reference and what they're looking for is the frame of reference you used to be comfortable in - however odd or unusual that is for each person.

That's what we lost or are losing along with our spouse. That comfortable feeling that used to make sense or at least a lot more sense than what we're being pushed to.

If life used to make sense because we had a spouse then I would get another one and I'm perfectly serious. In my life I don't want that. I want to be happy in my own life in a normal sense and much of that would be identical whatever my situation or the facts are - which is that I have to let go of how I thought in the past, learn these new things, and figure out how to be comfortable in them.

I know what I want and it means moving past my time as a couple in the reality of still being a couple but not having spoken or communicated in almost four years. That isn't what dictates what I am and am not allowed to do. Unlike so many I have true compassion for both patients and recognize that guilt about looking after myself is as natural as it is wrong.

These viewpoints are personal. It's impossible for anyone's not to be. I believe it's proper for me to focus on getting healthier and that it's improper not to try. That is what we believed in and that is always personal.

For me there is no 'afterwards'. Dianne is here with me and that comfort level and those memories and living more happily within 'our' things is my goal. How I define that Dianne is here with me is entirely up to me. I own the place. I run the place. I am the place. But some things are universally true in my opinion.

We all are our past. No one lives in the future. I am doing what I've always done. I am me now. I am moving through time in my body which unfortunately wasn't well thought out but there's no one I can call to complain to. Here are my conclusions though:

Human beings are freakasaurouses. Even the bright ones are wingnuts. Nobody remembers anything accurately. For at least six thousand years humans have come up with just one thing. Attack the other guy and take their stuff. How seriously are we supposed to take all this?

And that's where my conclusion comes in which is I don't. I didn't study what I did to make small talk at parties. I'm on a rock sustained by a continuous nuclear explosion which is a giant restaurant where everything is on the menu. I know that there are over 100 potential supernovae within wipeout distance because the place was designed with a transparent atmosphere so we can look. I would have made it opaque like the rest but that's just me. I'm unusual because I'm not interested in killing anyone over my beliefs which we're all absolutely going to find out about anyway so relax.

I don't believe my failures and successes are someone else's fault. I was as true a son as I was and I was as true a mate as I was and I had grandparents and parents and all those things have passed while I continue to be what I have always been and will always be until I'm not - which is me now.

One more thing. Look around you. Notice that everyone is busy being themselves whatever nightmare or fabulous thing that might be. Not you. Just everybody else.

Quick shoutout to all my ancestors all the way back. Two thumbs way up! Sorry I messed up and am a dead end. Oh well.

George's caregiver: There are as many ways of placing as there are people. Some caregivers hang on until they sick and broken, some do precise planning and research, some back into it, and others just jump in. Mostly it is a combination of the above. The actual placement is more of a "take a deep breath and jump in with both feet."

Everything is so new for both of you: getting to know how the facility operates, getting to know the staff, getting your loved one familiarized with this new environment (which, BTW, may take 4-6 weeks), and getting comfortable in your own skin with all of these changes and the enormous realization that you are now totally on your own.

You need a mantra. Something like "this is the best thing at this time for both of us," "this WILL work," or "I am afraid. OK. Keep swimming." I managed thanks to all of the kind folks who posted here and taught me how to do it and what to expect AND told all of us that this was a necessary step in saving ourselves.

Is it easy? No. But nothing has been easy since the diagnosis. You are very fortunate, George's caregiver, that you have interests and talents to help with the transition and distract you from the rawness of it all. With time, everyone adjusts.

If it is time, do it. And don't second guess yourself. If you find you are questioning what you are doing, pull up this site and read. You will find it said in a million different ways that you are not alone and the wisdom is that you have to save your self in order to care for your LO.

So, as they say in sport's advertizing, "Just Do It." We have your back.

George's caregiver,

There is a "sticky" ( which means it stays at the top) topic on Life with a spouse in long term care at the top of these message boards. There is much advice, encouragement, and support by those members who are going through this phase now. It has been almost 7 months since I placed my husband, and that discussion topic has helped me cope. I'm still working on the coping part. It's a long process with many ups and downs, and requires support from wherever we can get it.

joang

Pamsc, I know what you are going through. I placed my husband in August and I am just now beginning to settle in. A lot of it was due to the Medicaid hell I went through. The good news is he finally has qualified and even though I have no money I still believe I made the right decision. Oh I have doubts every now and then but when I visit and see his decline I know I did the right thing. It will be comforting for you to know he is safe and well cared for. I have become a much kinder and gentler person since placing him. I had turned into a raving maniac when he was home and hated what I had become. I knew this was not a good environment for either of us. You both will adjust. It will take some time . The hardest time for me was the first few months. God bless

pamsc, I share your anxiety about placement as I, too, will place my husband this week. We got most of his furniture moved yesterday and he will follow at the end of the week.
He is the complete opposite of your husband as he has almost no physical decline but is cognitively shot - really cannot put together a coherent sentence. The facility doesn't have
too many other residents in their 60's but I know it is the right decision because I cannot give him the care and stimulation he needs daily and, like CO2, I don't much like the
person this disease has turned me into. So, even though the house will be very quiet, I know it will be a much more relaxed space.

Best wishes for a smooth transition.

best of luck and support to those of you placing your spouses soon. its difficult yes but once they and you adjust things will take a better turn. stay focused and adamant its for the good of you both.
divvi

The doctor at the nursing home said something to my husband about it being hard to be in a nursing home, and my husband said "It was time." I was glad to hear that much acceptance, but I was also frustrated because it made it sound easy when in fact it was horrible. Two weeks before his attitude about a nursing home was "anything but that."

Anyway, the move went smoothly on Monday. Yesterday I cooperated with the constant phone calls and requests for me to bring things, today I have a very long day at work and an evening meeting and have said I will not be available. I haven't had time for the loneliness to sink in yet, and I have a son still at home so I am not alone in the house.

Pam - glad to hear the first day went well. Will be praying it continues but we all know there will be bad days.

I have been busy with trips to the nursing home and work and haven't really had a chance to grieve. What is bothering me now is that my husband is actually doing much better at the nursing home--rising from the chair without help, which he couldn't do at home the last few weeks, and walking with a walker (with someone with him). A friend wrote: "It is the tormenting reality of nursing home care that when you choose the right time, the patient immediately improves with the added help and appropriate care." It makes me feel like I failed in caring for him.

Pam, Perhaps just being in a more social environment has lifted his spirits and led to improvement. Congratulate yourself on figuring out what he needed and the amazing response.

He is still eating in his room--this nursing home mixes everyone together and a lot have advanced dementia, while his physical impairment is greater than the cognitive. Still, he does have more people at his beck and call, and he clearly likes that.

It is all confusing to me. Two weeks ago he was saying he would refuse to go to a nursing home, anything but that. Now he is telling people it was time. He went downhill so quickly the last month that I thought he didn't have much time left. Some of it was a UTI, but even after he got antibiotics he didn't come back very much. But now he has come back, not all the way to where he was five weeks ago but to what would be a much slower rate of decline.

Dementia has its ups and downs. The improvement you see will eventually disappear. It might be coincidence that it coincided with moving into a NH. Or it may be that a NH has resources that he needs and that it provides more structure. When my wife moved into an ALF she had trouble walking 2 blocks. Now she walks a mile.

You did not fail in caring for him. He needs more care than a single person can give, you are caring for him by providing him with appropriate care.