Oct 17, 2013

How Can I Possibly Love My Husband and Think of Him as I Did Before Alzheimer's?

How can I possibly try to love my husband (of 49 Years) who is in Long Term Care and -- to think of him as I did before Alzheimer's came into our lives?

+Alzheimer's Reading Room

Alzheimers Love

In 2010, Carole Larkin wrote an important article entitled, Ten Tips for Communicating with an Alzheimer's Patient. The article has been read by over 50,000 unique readers worldwide.

Carole Larkin MA, CMC, CAEd, DCP, QDCS, EICS is an expert in Alzheimer’s and related Dementia care. She is a Certified Geriatric Care Manager who specializes in helping families with Alzheimer’s and related dementia issues. Carole can consults with families via telephone nationwide on problems related to the dementia. Her company, ThirdAge Services LLC, is located in Dallas, TX.

You might consider sharing the title and URL of the article in the Alzheimer's and Dementia community, on message boards, Facebook, and on Google +. What you are going to read below could make for good support group conversation.

Recently, Carole entered into a conversation with Carole Noble in the comments section below the article.

Reader Carole Noble asked:
How can I possibly try to love my husband (of 49 Years) who is in Long Term Care and -- to think of him as I did before Alzheimer/s?

I see him as a shell of his former self.

Or is it he at all?.

He doesn't recognize me, cannot speak etc.

I dread my visits and go rarely. Then, of course, I feel guilty.
Carole Larkin responded:
I think it would be easier to not try and think of him as the person you knew before Alzheimer's when you are actually with him.

When you are actually with him, if you can separate your memories of the past from the person you see in front of you, it may go better for you.

By that I mean, when you are physically with him if you think of him as not your husband but just as a man you are visiting as a volunteer, to make his day better, You are actually separating yourself emotionally to do a greater good for you both.

When you go home then you can think of the good times in the past, and at home not connect them to the person you have just seen. In other words, hold the memories as ends in themselves much as you would do with others in your past that are no longer with us, for example you mom or dad or grandparents. At home, not visiting at the nursing home.
Keep your visits short. No more than an hour. It probably exhausts him if you do more than that. Or visit with him for a shorter period of time, then take a break and talk with the staff over current conditions or concerns, then return for a little while to him. 
When there, your only concern is making a good moment for the person you are visiting. That is whole purpose in being there - nothing else.

Since he is far enough into the disease that speech is no longer the method to communicate, you will have to go to his remaining senses to communicate.

He may like things to hold or play with, using different textures or shapes. He may like listening to music from his past, he may like looking at pictures of things connected to his past. Not family photos, but if he fished, pictures of people fishing in a stream. If he golfed, picture of golf courses - you get the drift.
Using smells and taste could work too. His favorite candy ( if medically allowed, of course). there are products you can bring that help with these activities. Go to www.bestalzheimersproducts.com or www.alzstore.com . 
I know it is hard, hard, hard to do, but if you can do these things, especially the separating your memories and emotions from the person you see before you, your suffering will ease and therefore your guilt at not visiting more often will ease. 
As a matter of fact, you may visit more. Give these things a try, It couldn't hurt and it just might help.
Carole Noble responded back:
Dear Carole 
I am quite taken by your prompt, thoughtful reply.

Yes, I must try much harder to be objective at my visits which I find extremely painful.
I attempt to pre programme myself for the visit-- that I will consider him as a very ill patient, and especially, that I was not the cause of this most horrible disease. And that I could not aid in any improvement of his condition.
Sometimes, if I think of his state as a disease, rather than extreme memory loss, it helps in some small way that I cannot explain.
Do you know what I am trying to say?
Could it be the Stigma... still attached to mental illness as opposed to a long, lingering death from cancer for example? Two members of his family have succumbed to Alzheimer's disease.
I agree completely with your advice re objectivity. However, at home, I still cannot bear to think how intelligent, funny, creative, and active he was... because it simply breaks my heart.
I suppose this is my own personal way of grieving ...  to try to Forget!
Is this utterly unhealthy? Because, for now, it is the only way I can survive mentally. 
I play the piano for him but I can barely even do that.
Brings back far too many memories for me. So I have stopped.
I greatly fear I will feel enormously guilty after his death ... that I have not visited and stayed enough with him through this. 
Looking after him at home for two years was all I could do. Then I feel I am being selfish, concentrating on my feelings and not his. 
Is there no way out? 
Just cope, day by day, I guess. 
I do have a wonderful psychotherapist who has been supporting me for over 2 years and I attend a support group. 
I need all the help I can get. 
Again, I so much appreciate hearing from you. 
Warm wishes from Carole to Carole
And Carole Larkin responded:

What a lovely name you have! ; < )  
I think that you are on the right track, thinking of it as a disease rather than memory loss. At home, if trying to forget helps, keep on.  
Ultimately only you knows what works for you. 
Can you bring in music rather than play the piano for him? Will that help any with your feelings? 
Gosh, you already feel guilty, and selfish, and are grieving before death, by the way, all normal and perfectly understandable emotions. However, you recognize them to be counterproductive to your mental health -- that is good. 
Also seeing the psycho therapist and going to the support group are also good. I applaud you doing those things. 
Let me give you a suggestion of a book that helped me tremendously when I was dealing with my mother's Alzheimer s. Although it's examples are generally from earlier in the disease than your husband is, the thoughts and techniques to use are equally applicable to persons dealing with loved ones at end stages too.  
The book is : Coping with Alzheimer's, a Caregiver's Emotional Survival Guide by Rose Oliver and Frances A Bock. 
I give the book to some of my clients when I see them suffering from psychic pain such as yours.  
God knows, my copy is tear stained, food stained, crumpled and rumpled, but it is that way because I went back to it again and again. perhaps it can help you too.

Related Articles

You are reading original content +Bob DeMarco , the Alzheimer's Reading Room