Dad is still trying to find reasons not to move to an assisted-living facility (ALF), but I'll talk about that another day.
Today, I want to talk about me (and, by extension, some of you in a similar situation). I have been caring for Dad since last May, and it will be this May when he moves to ALF. There is a chinese curse "May you live in interesting times", because "interesting times" times are not easy. It has been an "interesting" year...
I tried to think a couple of months into the future for my planning for Dad to move to an ALF. But I planned a month too short. Dad is having real problems right now rather suddenly and there is no where for him to go for a month. You don't have to suggest in-home care, I'm looking into that. And anyway, this is for others.
My point is that a month is so short a time normally, but a very long time when you are caring for an elder who needs professional care "now". I'm not comparing myself to others. Some people are more able to care for others than I am. But whenever you really think "next month", think "I really should have found a good place last month". It is so easy to think there is time, and then the day is on you. It happens far more suddenly than you expect.
And this is a thing you seldom get to learn from for better decisions in the future. Elder care is (usually) a one-off event. A parent takes the care of a spouse and then that parent needs care him/her self. That's you doing that part. No matter what you think, how many books or newspaper articles you read, you won't be prepared. You cannot understand dementia, and you cannot understand what it means for a person in your house who can't (please don't jump on me if you are "differently-abled") just walk around.
Your elder parent will go from difficulty getting out of chairs to a complete inability to stand up at all in just a week. He/She will very suddenly discover that the time it takes to get to the bathroom only 30' away is longer than nature allows. It just happens one day.
No one wants to send a parent to an ALF, but trust me, a month too soon is better than a month too late. April will be a very difficult month here. So, for what it's worth, some thoughts on things I wish I had known..
1. Visit local ALFs months before needed. Bring the elder. Take pictures of the place. Pictures provide familiarity.
2. Get the Dr evaluation form early and bring the elder to the Dr before required. The difference in the Dr evaluation from one month to the next can be very informative. A geriatric Dr is best. He/She can tell changes in abilities better than you can.
3. Most ALFs are good, but some are more good than others. Your elder can help you decide which suits him/her better than you can. I didn't allow my Dad to be involved. That was a mistake.
4. Bedrooms matter. Size is important. Your elder will think of the bedroom as a primary living space. Even if that is not the primary living space.
5. It's "I need to talk to you", not "we need to talk" when The Conversation occurs about moving the elder to the ALF. Explain the household situation calmly, and emphasize the elder's care. Your own stress and tiredness are YOUR problem, not his/hers. Stick with the elder's physical needs, not the mental ones. The elder is SURE his/her mind is fine, but does know about physical problems. Stay calm through endless (and repeated) questions. There will be many.
6. Discuss the move daily. Repetition helps. They forget.
7. Get the elder new clothes that fit well. Everyone wants to make a good initial impression. Seriously, have you ever seen an elder with good clothes?
8. Talk to the ALF staff about minor details. Ask them what residents want that no one thinks of. They know. Sometimes its just chocolate chip cookies in the bedroom for late night snacks. With a nice note from the child. Or maybe a reminder of how to make a martini.
9. Schedule visits. Routine is very important to elders.
10. Remember that The Conversation is NOT a debate; it's a decision. Your decision. There will be "you are kicking me out". But it really is your decision. Accept that. You are doing what is best for your elder. Keep it in terms of what care your elder needs, not whether you love them. Of course you love them. But don't allow that to be the discussion.
I am not feeling guilty now. I've done what I could and it is time for professional help. Professionals know how to help an elder better than I can in the last stage of life. When you have been caring for an elder, sometimes the hardest thing is to let go. Be willing to let go...
Heck, when Dad falls down, I don't really know the best way to pull him back up. But trained staff does. I don't really know how to answer his really weird questions. But trained staff does.
About all I can think of for now...
11 comments:
All very true, Mark. Well said. Changes in the needs of elders don't occur in a predictable and steady way. There are ups and downs, and the downs can seem quite steep in one 'jump', so to speak.
Megan
Sydney, Australia
Excellent post Mark. You are so "right on" with all of your points. As I'm reading this, I'm thinking there are a few things Don and I should be doing now - while we are healthy enough to be doing them.
I am *only* in my 50's my husband in his 60's. he has Parkinson's and we are already considering senior living that provides ALF and then nursing home capabilities now. It's better like you suggested to plan ahead.
Very well thought out.
Don't forget to take a bite of time for your own happiness in the upcoming month--try and gather some good memories for yourself.
All good points, sometimes we put stuff off, hoping it won't come to that. Better to be prepared and be proactive versus reactive.
So sorry to hear that things have disintegrated so rapidly - it robs you of the good memories that you'd have had. It's a fortunate thing you were on the prowl for a facility when you were. I'm glad in-home care is in the works too.
For what it is worth - Happy Easter. Take care - T.
I'm hoping for the best for you and your Dad. My sister is in a ALF and she's only 67. You just never know. She's been in there a couple of years now. Way too young. It breaks my heart. I hope your Dad will be close enough for you to visit.
Best regards.
Ah Mark...I am so sorry things have gone so badly so quickly. Good advice here though I have no parents still, it is something even for me to think about when I get older and to tell my children.
Thinking of you as always and with you as much as possible through this medium while you do what is needed.
Rock on! It is so tough when the roles switch!
I find myself thinking "you got that right" at all of your points! I'm sorry you're going to have an interesting time this month.
You are so right about how things can change so fast. My dad was fine, then things changed with the snap of a finger, ok, a fall on the ice, but things happened fast, and now we know that it was rotten cancer again all along. We have hopes that things will improve. Unfortunately with dementia, you know it wont.
I do want to commend you for what a wonderful job you've done and for making the tough decision.
I boil the nectar because when it comes to the boiling point and you pull it off the burner to rest and then refrigerate the unused portion, the bird societies said it retards spoilage somewhat in the feeder that way. Just let's it keep maybe another day or so in hot weather.
I change my guys nectar every third day when very warm...every forth day otherwise.
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