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10 things I've learned this year in taking care of my husband with dementia:


1. Trust God for the future.
2. Take care of yourself first.
3. Ask for help; or at least, when someone offers, take them up on it.
4. Don't lose contact with your friends - you need them.
5. Make time for fun - find an escape.
6. Take one day at a time.
7. Count to 10 before speaking harshly.
8. Focus on kindness.
9. Give yourself a break and avoid guilt - it doesn't help.
10. Leave the past behind - it can't help you now, it can only hurt.

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Well said!

Thank you for sharing your useful list.
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Thank you Jean.:-)
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I always tried to remind myself that it could be me in the position my parent was in, and how would I hope someone would treat me
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Humor.
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I like your top 10!

My mom is in a hospice house now with end stage Parkinson’s disease.

So, I suppose my answer is that I cherish the time that I have left with her. So, my answer is gratitude.

I am grateful for the time that I have left. I don’t know how long that will be. That’s up to God.

I know that she is so ready to be with my dad in the afterlife.

I am extremely grateful that she is receiving excellent care.

So when I get down. When I find it hard to see her completely bed bound. I remind myself of the care that she is receiving and it makes it a bit easier for me to handle.
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I will add: Don't sweat the little things and try to enjoy your time with your loved one,(as hard as it can be sometimes) as someday they won't be here, and you would give anything for just one more day.

Great job on your list. I hope all caregivers will pay attention to it, as they are wise words indeed. God bless you as you continue to care for your husband.
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Someone gave me a gratitude journal and I try to write down three things I’m grateful for at the end of each day. It can be anything- large or small- and it helps to look back on the many things there are to be grateful for.
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Thanks.
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* Walk away from the quarrel. Or don't take the bait.

My husband picks arguments to prove himself dominant and in control except with those whose favor he needs (like doctors, past friends). I've now come to the place where I remind myself, "Walk away now." This keeps the atmosphere from degenerating into ugliness.
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Here are my top ten:
You have some helpful answers here. My own experience of looking after my wife at home with Alzheimer's for the past 12 years, with support from the Home Instead care agency is:

1. Avoid dehydration. Coconut water (not coconut milk) tastes good, has lots of nutrients and is an attractive drink. 50 ml of Kefir and 150 ml of coconut water is an attractive drink, especially between meals.
2. Establish and try to keep to a daily and weekly routine. Moving out of a routine often upsets those with any kind of dementia.
3. Dr Rangan Chatterjee's book, "The Four Pillar Plan: How to Relax, Eat, Move and Sleep Your Way to a Longer, Healthier Life (Penguin Books, 2018) has a lot of helpful advice. It's not about dementia, but he does point out: "Researchers believe that sleep is the time when we clear out the beta-amyloid, which accumulates in the brains of Alzheimer's patients. Sleep also helps us lay down new memories by promoting the growth of new nerve cells" (p. 205). Sleep doesn't remove the beta-amyloid or Tau in the brain, but it seems to give the person with dementia time to regain their ability to relate.
4. Keep a sleep diary and behavioural diary in which you link good and bad days with behaviour. See if there is a pattern between hours of sleep and behaviour. Dr. Chatterjee points out that sleep is in a series of deep sleep for 1 /2 hour throughout the night; and you need four or five periods of deep sleep a night to be rested the next morning. If the person with dementia is waking up a lot, see how that relates to the 1 1/2 hour patterns for deep sleep. That can be helpful to you too to get enough sleep.
5. Seek support, whether paid/unpaid/family/friends. If you try to do things on your own, you will burn out. Someone might be willing to help out once a week with a visit or outing. I have found the Home Instead Senior Care agency quite helpful. It's a US-based franchise, and its local groups are well-trained.
6. Keep alert for new challenges. I made the mistake of leaving two hearing aid batteries on the dining room table. My wife put them in her drink, but I saw it and managed to take them out before she drank. A doctor told me that if she had swallowed them, I would have had to rush her to hospital . . . and if she had drunk them and I had not noticed, I would not have known what to do.
7. Mobility is often an issue. Plan ahead--not too far ahead--but plan ahead what to do if the stairs or getting out to the car become too difficult.
8. Accept the need for "therapeutic lying"--that is, not always telling all the truth. Almost everyone with dementia is a time traveller, going back into the past. Seek to find out where in the past they are and get beside them, accepting that you are to them a different person or a different age. Then distract as much as possible.
9. All dementias are progressive. You need to consider carefully how long you can care for someone with dementia at home, especially with appropriate changes in architecture (stairs, bathroom, gates, personal alarms if someone gets out of bed at night, etc.) Everyone is different. Care homes will find it quite difficult to give your loved one the personal attention they need. Also, everyone has to do the same thing at the same time--eating, sleeping, watching TV, etc. This creates a lot of problems, because we are all unique persons with different habits. Home care can work well, but only with adequate support from others.
10. Train yourself to be resilient. You'll need it! See Matthew Johnstone's "The Little Book of Resilience: How to bounce back from adversity and lead a fulfilling life (Little, Brown Book Group, 2015). Also helpful is Michael Neenan's "Developing Resilience: A Cognitive-Behavioural Approach," (Second Edition, Routledge, 2018).

Be encouraged--you're already tackling problems as they arise.

Love and Prayer
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Your list is great. I would change number 6. Not one day at a time, but one 15 minute block at a time.
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All good ideas! But at the end of the day ( and in the middle of the night) it is just you and hope and prayer is all you have
God Bless
I made it with sanity intact but I still remember guilty moments😞
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The first thing on my list would be: meditate daily, and try to do some yoga or walking outdoors.
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I'd add that I'd try to find a sense of humor about things. That's what we did, when we took care of my mom with Alzheimer's. I even wrote a book about it called, "My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale." I tried to write it with humor and heart, since you need both in life, and particularly when you're dealing with Alzheimer's. I'll share a funny anecdote from it: Hubby and I had ordered an electric cushion to go atop her chair, to help ease her up to a standing position, due to her arthritic knees. He's describing the dimensions of this package to the postal worker who was looking for it, and he said, "I'm not sure how big it is. It's an electric chair for my mother-in-law."
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I would only add:

When your loved one is gone, reach out to others—there are always others who need help. You’ve been through difficult days, and now you know how to better help someone in a similar (or not-so-similar) situation.
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I have one suggestion based on experiences. So many people say "take one day at a time". While this works for many people, it nearly killed me because to me when I was going through things in life, each day was just like the day before and I could not handle that. So I decided to look at "the future" and always had in my mind an idea of the ideal future when there would be peace. Somehow that kept me going where one day at a time would have pushed me over the edge - I know, I tried it. Having the longer goal in mind helped me to survive. Try thinking that way. There will come a time when this will all end and peace shall once more reign.
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Eat nutritious food. When so incredibly busy caregiving, don’t skimp on what you eat to fuel your body and mind.
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I appreciate this positive, hopeful list and the added comments. I agree 100%. When we tend to talk about the hardships of caregiving we often overlook the things we are learning from our experiences. While I think we all need to vent and seek help navigating through these experiences, it’s refreshing to see growth as well.
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Along with #7 in WearyJean's list, I recall having read some years ago that when an elderly woman was asked how she managed to get along well with people and stay kind, she answered "Before I speak, I taste my words, and if they don't taste good to me, I won't share them with anyone else." I'm 68, and I'm still learning how to do this--sometimes I'm better at putting poison in my words.
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-Humor wherever you find it. Even daily conversations about poop (drastic if you did and even more so if you didn't)
-Cuss it out in another room and then return. I've had some pretty good conversations, alone, and in another room
-Humor wherever you find it.
-If you're a caregiver, there's no reason to have guilt. You're doing the best you can. Let others who don't step up to the plate carry the guilt load if they even feel guilty.
-Keep the patient up and moving as long as you can. Diapering the same. You may be a caregiver, but do what you can to lighten your load.
--Humor wherever you find it.
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When you take care of your self...this is first! Get help and get out of the house when help comes...they do not need supervision once they have "passed your test". Get support from Karen the care supervisor...she is on your side.
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Hello all you WONDERFUL PEOPLE!
Didn't anyone mention Milky Ways?
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Make time for fun? How??????????????????????? We are in COVID still. Hired part time help while I am at work, then home for making dinner, shopping, cleaning, and moderate caregiving. When are we supposed to schedule this fun time, exactly? No spouse, no kids, no sibs...just yours truly.
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Dear BritishCarer I never call it therapeutic lying; I call it visiting their world and giving the answers that soothed the agitation - my dad didn't time travel so much as just travel - some of my answers were out and out lies - well not lies since his scenario was just as false. Such as some fictitious woman he owed $25; he needed the money to pay her back; Don't worry about it dad, I paid her already the check's in the mail.

I agree with My2Cents: Humor wherever you can find it.

But so many good answers above.
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Thank you, WearyJean. I like your list a lot. I would just add two:
11. Stay positive, looking at what he CAN do.
12. Cherish small moments. My husband patted me on the back one day, walked up to me another day with arms out for a hug. Shocking but more importantly priceless!!
Wishing you peace!
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It's okay to be angry for a moment in time, BUT don't let it consume you.
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When I have a tough job ( really nasty diaper, another drink spilled in her bed for the 3rd time) or if my wife is especially angry or in a bad mood. I sing a happy, joyful, spiritual, or funny song, no matter how BIG and BAD the mess!
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1. Be angry at the disease, not the person afflicted. Keep telling yourself, it's not his/her fault.
2. Take up meditation and/or yoga to give the mind a "mini-vacation".
3. As in raising children, pick your battles...if he wants to wear his day clothes to bed, don't fight it.
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That’s a good list. Humor is important. My mom wants to go home to our house which she already is home with us. It’s hard to convince her that we are not at another’s person house. The other day after saying she wanted to go home I said “ Well let’s go to the bathroom and make sure you have dry depends on.” As she sat down on the toilet, a few seconds later she said “ I’m glad to be back home.” Gotta love her!
The other thing I do is keep a care journal. It started out for the two caregivers we have helping us. But then I also write in there various things we have talked about and the humorous remarks. This is also helpful for visits from the nurse as she can see the process in moms eating and sleeping habits.
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These are great suggestions for being a caregiver to a loved one. I am taking care of my husband of 32 years who now has a prosthetic left leg and he is very moody most days. Our love is what keeps us going and not every day is easy but we just take it one day at a time. When I need a break I go do some errand away for a little while and that really helps me. Honestly I didn't see this as how our future would end up but we never know what will happen and we handle it the best we can. Good luck on your care giving of a loved one!
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