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.
Thank you for sharing your useful list.
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.
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.
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.
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
God Bless
I made it with sanity intact but I still remember guilty moments😞
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.
-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.
Didn't anyone mention Milky Ways?
I agree with My2Cents: Humor wherever you can find it.
But so many good answers above.
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!
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.
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.