Love Really is the Greatest Gift of All

On December 25, Lori La Bey of Senior Lifestyle Trends posted a very personal and insightful blog on her web site www.alzheimersspeaks.com. Her mother is in the later stages of Alzheimer's disease and is fairly unresponsive. She lives in a long term care facility and has for quite some time; I am in awe of Lori and how long she and her family have been dealing with the disease.

On her blog posting entitled Gift Giving Another Casualty of Alzheimer's Disease, Lori writes about her decision not to give her mother a present this Christmas. Lori dug out her driveway from the most recent snowstorm and visited her mom on Christmas Day, but knew that if she went inside after shovelling to warm up, she wouldn't go; would her mom even miss her that day? Would she mind if her Christmas card was a day late? I should add that Lori recounts in her blog about the years when her mother did respond to and appreciate the gifts she brought and in comparison to those days, her mother is not responding to gifts any more.

Lori's post was so compelling that I started to write a comment, but when the comment began to get longer than what is normal and polite, I thought I had better respond via a posting in my own blog. I wrote to Lori and cleared this with her. I know I'm a little late for Christmas but opportunities for giving gifts to our loved ones with dementia come up all year long, as do opportunities for struggling with our own decisions, conscience and guilt.

While I think you ought to read Lori's blog before reading this response, I'll just sum up Lori's feelings. Lori DID go and visit her mother that day. She considered buying flowers but then realized that she would be buying them for herself, not her mom, who would not remember that the flowers were for her or who they were from or what they were for. Lori felt that the flowers would make her "look" like a caring daughter but had nothing to do with how much she cares, how often she visits, or the quality of her visits. We've all done the last minute present thing to avoid walking in to someone's home empty-handed, particularly on a day designated for extreme gift-giving. It makes us look good and feel good, and, if we have chosen well, brings some joy into the recipient's life. But to make the decision NOT to bring a present?

Lori writes about the sadness she feels at not buying a gift for her mother. There is no joy in giving her a gift at this stage of the disease. Lori sees gift-giving as another tool in our vast caregiving toolkit, a way of connecting with our loved one with dementia. But when the gift fails to provide that connection, then the question is: what is the gift worth? So she made the difficult decision to stop. Alzheimer's disease stole the gift of gift-giving from Lori. However, Lori realizes that the true gift that she brings her mother every day is the gift of herself and her love, and that this gift needs no instructions, no commentary, no response, no wrapping paper.

But at the end of her post, I was still stuck with the question: So why stop giving gifts? I wondered if Lori had fallen into the trap that most of us fall into at one point or another in our journey with dementia, that of trying to demand the same response now that we would have expected from our loved one pre-dementia.

Now you need to know that I also stopped giving presents to my mother, especially at Christmas. I'd decided that she probably didn't know it was Christmas anyhow, and seeing as I was living far away and wouldn't even be able to deliver the present myself, it would just be confusing for her to be given this random gift from someone she didn't remember (and wouldn't remember even if I was standing right in front of her!). I used to send her baskets of goodies via a delivery service for Mother's Day, her birthday and other special days, and I stopped that eventually as well. Things got stolen and misplaced; it was a waste of money.

Now, in retrospect, with what I know now -- and if I had been living closer -- I would never have stopped giving gifts. I would give a gift every time I went, and here's why.

When a loved one has Alzheimer's or another form of dementia, one of the things that a caregiver needs to realize, and realize it quickly in order to stay sane, is that everything that used to be, everything that you used to measure yourself and your relationship with that other person against, every way in which you used to measure time, response, emotion... everything... has changed and you must change with it.

If you give a gift to a person with dementia and five minutes later he or she doesn't remember who gave it or what it's for, you have to be OK with that. If you don't feel good after giving the gift because you didn't get recognition for it, too bad. Perhaps for one minute, or one second, they DID know and it brought them joy, but now it doesn't. Oh well. You have to drop all of your preconceived notions about what you want and what you expect and then, just go with the flow and most importantly, whatever happens... don't take it personally. All of the questions you may have asked yourself years ago after giving a gift, such as "Did he like it?"; "Does she think I'm an idiot because I gave her socks with pink hearts on them?"; "Does he love me less or more because of this gift?"; "Have I done everything I could -- perhaps I should have sprung for the 100% cotton shirt instead of the purple polyester one that was on sale?" -- you have to drop them. They just don't apply anymore. Yes, OK, for one fleeting moment your loved one MIGHT think something along the lines of "Who is this person and why did they just give me this strange thing that I am now supposed to put on me?" but the thought will be fleeting and will not reflect on you personally (especially if they don't remember who you are!).

A person living in the later stages of dementia is living in the present (and by the present, I mean NOW, this second) because there is nothing else. As a caregiver, you need to step into this reality and realize that all that matters is Right Now, not five minutes ago, and not half an hour from now. If you were able to bring joy into their Right Now, then you have done something wonderful. If, for one second, you were able to make them think, to use their cognitive abilities, to feel curiosity, excitement, wonder, by giving them a gift that they (with your assistance most likely) need to open, then you have increased the quality of their life for that one second. And because that one second is all that there is, then you have done everything.

If you feel as if you are bringing a gift just to make yourself feel better (less guilt, for example), then bring it anyhow. So what? If you're doing it because you think it will make you look like a better son or daughter, then bring it anyhow. Doing something to make yourself feel better is just fine.

Perhaps you can alleviate your guilt about making yourself feel better by bringing something useful such as clothing (which you probably have to supply anyhow), soap, lotion, toothpaste, a favourite food or drink. Bring a mini-album of family photos. Bring a picture to hang on the wall. Bring a stuffed animal. Bring a flowering plant. Bring a funny hat (OK, not so useful). Bring a book of songs that you could sing together, one song at a time when you visit. I think that anything that can provide some sort of stimulation is good (a flowering plant or a picture to provide visual stimulation, for example) and something that demands interaction is even better.

And this is where Lori's opinion and my opinion on this matter of gift-giving actually converge.

Lori writes that she needs to accept and appreciate the gift of her self, a gift that is simple, easy, needs no direction or comment. She says "Our delivery is the important thing with this gift. Our attitude. Our love. Our compassion." Our delivery... that's the key. And she is so right.

What people with dementia need from us, more than anything else, particularly in the later stages when it is so easy to give up on attempting human interaction, is, human interaction.

One-on-one, get down on their level, look them straight in the eye, hold their hand, step into their reality, give them a hug...interaction.

Human interaction is simple, easy but actually it does need some direction, at least for the person without dementia. For the person without dementia, meaningful interaction is probably the most difficult thing to do... probably the hardest gift to give of all (everyone who has ever visited a person in the later stages of dementia knows how hard it is to know what to do and what to talk about during your visit).

Because what you are doing is loving and giving unconditionally, without expecting anything in return except the knowledge that you are doing the best you can and are probably doing the best thing that you can do for that person, in their one second.

So Lori, as you know, you haven't stopped giving gifts. You are bringing a gift to your mom every time you see her, and now you are giving the gift of your experience and knowledge with the countless millions of caregivers who will be following in your footsteps, asking the same questions you are asking and feeling the same things you are feeling. So stick a bow on your head; your love is the greatest gift of all!