Recently a long-time friend expressed serious concern about her husband, and wondered if dementia was in their future. She asked for advice. It made me start thinking about what I would want a friend to know if they were dealing with this diagnosis. What I would have liked to know at the very beginning. This is what I came up with:
1. If you don't know everything there is to know about your money situation, find out right now. And keep an eye on the money all the time, because a lot of people have found out too late that dementia doesn't necessarily keep you from spending money, but it can keep you from spending it wisely.
2. Get all your legal documents in order as soon as possible, if they aren't done already. See a really good elder law lawyer to make sure things are done right. (Our lawyer teaches classes on elder law to other attorneys and advises the legislature on laws that relate to this field, which makes me feel a lot more secure about our paperwork being done right.)
3. Start getting your name on all your loved one's medical records, so doctors will talk to you about medical issues. I actually have to sign as POA to give them permission to share DH's medical information with me. Does that make sense? But it really creates a difficult situation if you need to talk to a doctor, and you don't have the right paperwork done. And you will need to talk to doctors!
4. Hook up with a support group--in person, online, whatever you can find. As many groups as you can find. This is where you find the information you need to know, and it's where you get to talk to people who really understand what you are going through.
5. Educate yourself about this disease--read, watch videos, talk to people. If you don't educate yourself about the many possible situations you could be facing, every single thing will blindside you. It's hard enough to deal with all the challenges, but if you can say to yourself, "Oh, right. I read about that. This is what to try." it's a huge help.
6. Decide right now that both of you matter. It doesn't matter how much you love the person you are caring for, if you don't take care of yourself and have some semblance of a life outside of caregiving, it will bleed you dry. (My own opinion, of course.) And the wearing down of the caregiver can happen so gradually that you barely notice it until you can hardly function. Investigate ways to get a break--home care, day care, respite stays. Investigate places where you can get financial assistance, if you think you might need it. Look into medicaid and how it works in your state, whether you think it's in your future or not. And start on these things before you think you really need them. It took us months to get approved at the local Council on Aging office, and shortly afterward the waiting list was frozen for a couple of years. I shudder to think what would have happened if I had waited until we were desperate for help. Desperation is the worst companion you can have while you try to wade through layers of paperwork and bureaucracy.
7. If you can, talk to your loved one right now, while they are able to speak about it, and ask them what their wishes are at the end of life. Since this disease progressed slowly for DH, we were able to talk at length about what he would want in different situations. These are very difficult discussions to have, but DH wanted me to know what he wanted done. And now I feel confident that I can speak with his voice if we come to that point. I think that will help when I have to make those terribly hard decisions. (And while you're at it, you might want to let someone else know what your own wishes are. It was really tough for me to face that my husband was not going to be able to stand by me when my own decisions had to be made.)
8. Last but not least. When DH was diagnosed, I thought I would never smile again. But sometimes after that diagnosis and the giant ground shaking it causes settles down, people do find things they can enjoy doing together and life is not all bleak and hopeless. It's really not. Work toward that enjoyment. Find little pieces of joy wherever and whenever you can.
Please add to this list. I am going to send it to my friend, but I wanted it to be information from other caregivers, too, so it didn't sound so much like me trying to boss her around! (I don't know why she would possibly think I was bossy. But a big part of my life for over a decade has been coaching and reminding and finally telling someone what to do, all day long, every day. It's really hard to turn that off, but I do try.)
Maybe this could help other new caregivers on these message boards, too.
First, and most important, find out if he actually has dementia. There's no use ruining your life with #s 1-7 if it's something else that is more benign.
Second, if you do not take control of the situation (e.g., by #s 1-7) , it will take control of you. That's where Jan K's advice comes in. #s 1, 2 3, and most of #6 are all in the same category. Those points and #7 are all good advice but they are just things that have to be done so you can survive. They are not going to make you any happier in the short term.
Third, regarding #8, realize that delayed gratification is your enemy. If you have been putting off leisure activities or trips for years, take them now, even if you can't afford them. Before this hit us, we lived fairly frugally, but after the diagnosis, I started buying tickets to MLB games in our state's big city, as well as taking some long weekend vacations and even some week-long trips. We did not have enough cash so I charged them on a credit card. Best money I ever spent.
Fourth, open your mind to arrangements that you would not have previously considered. I have run into many people in support groups who refuse to have any help in the house but insist that they will care for their spouse at home until the end. Yes, having someone else in the house is disruptive but you can't have everything you want in life.
Finally, realize that the balance has shifted (depending on the couple, either just a bit or a lot). IMO, the most valuable thing you can offer your spouse is your intelligence and sanity, for your spouse is going to lose theirs. As your spouse gets sicker, you will have to take on a different role and may have to assume a different persona. Just accept that and do whatever you have to do to survive. This is no time to stand on personal principles: if you have to go to a shrink and get some antidepressant drugs, just do it; if you have to lie to your spouse or hide things from them, just do it.
That's a great list, Jan K. I can think of one addition for now:
* Consider that over the next few to several years, if you become a caregiver, your social circle may shrink drastically, possibly until it contains just one other person: your spouse. The isolation that caregiving brings can be devastating, especially when added on top of day-to-day demands. Make an effort to stay in contact with the friends and family you have now, even if it seems as though you're taking time away from other important things. If friends or family offer to help, and if you can make that work, don't be too embarrassed to accept. You'll need the emotional support.
If you log onto the homepage - www.thealzheimerspouse.com -, right in the middle of the page is a section labeled "Newly Diagnosed?" That link has a long list of resources and information for those just beginning the Alzheimer journey.
As Myrtle said, but I think it bears repeating, get a full, thorough neurological workup, so you know exactly what you're dealing with. ("Dementia" is really just a catch-all term. There are different causes of dementia...different dementia diagnoses.) It will help immeasurably in planning for treatment, knowing what to expect, and also just for making your life plans in general.