Week 6: In Praise of the Dementia Caregiving Team
By Elizabeth Shean, Caring.com contributing editor
No one who cares for a loved one with dementia does so alone. None of us toils in a vacuum.
In re-reading previous posts, I fear I make it sound as if I – and I, alone – care for my dad. Nothing could be further from the truth.
My husband and I made the decision jointly to invite Dad to live with us. We had what we thought was a thorough discussion, even though now we laugh at how shallow our talk was. ("Well, we can add some furniture to the guest room, and... that should take care of everything! Whee!")
When we made this decision, I was working just two days a week as an RN. "It will be perfect," I said, apparently envisioning some sort of caregiving shangri-la. "I'll have five days a week to take care of Dad. We'll have a wonderful time."
However, between the time of the decision and the day Dad actually moved in, radical changes occurred at my workplace. Two nurses quit, which left me the lone RN standing. Over the course of three weeks, I went from working two days a week to working four days. Long days. Ten- or 11-hour days. And, for various reasons, we will not be hiring another full-time RN in the near future.
Given these circumstances, Lee stepped up to the plate. He's the one who spends the most weekday time with Dad. He's the one who comes home from work by 4:30pm in order to get dinner on the table at a reasonable hour. He's the one who makes sure Dad gets his evening pills.
Lee also makes it a point to think of creative "guy activities," like putting up a bird feeding station, to do with Dad. As a man's man type, Dad needs to feel he can still contribute to the household, and Lee goes out of his way to give Dad handyman tasks that Dad can still handle.
It's difficult for me to express my gratitude to my husband of nearly 30 years. He cares for Dad because he cares about Dad, even though Dad is his father-in-law, not his own father. That says a lot.
Another member of my caregiving team is my best friend, Mitzi. On a recent weekend, when I was feeling overwhelmed and had a little meltdown, Mitzi was there for me, on the other end of the phone, encouraging me and helping me dial down my perfectionism. She also has offered to take Dad out for coffee and simply visit with him, in order to keep him from becoming depressed by being confined to the house four days a week. Again, I find it hard to express my gratitude to her for this.
I know other people will join my caregiving team as time goes on. I am looking forward to meeting them – and hoping I can return the favor, in time.
Oh, yes, there are angels among us. My caregiving team consists of my 28 year old son, who lives with us. He encourages me and his Dad, vacuums the house regularly, takes the heavy trash can to the street, takes me to dinner every week or so, and so many other things, small and large. I am so blessed that he moved back home just when Tom's health really took a nose dive. He has a tabby cat named Spaz who, believe it or not, is also a member of the team. Most of the time, Spaz stays downstairs in Stephen's apartment but, if Tom is having a rough patch, Spaz stays upstairs close to his Papa. I remember one period of time last year when Spaz stayed upstairs under the table by Tom's chair for nearly 2 weeks, only going downstairs to use his litter box. I really thought the end was near because I had seen stories about cats who could tell. Some mornings, when I come out of my bedroom, Spaz is sitting, looking down the hall at Tom's bedroom door and I get a little freaked out. My daughter Vicki is another of my angels. She has lunch with her Dad on Tuesdays and every three months comes to stay at the house with the guys, so I can get out of town for R&R. If Stephen is working, I can call her to sit with her Dad so I can go out in the evenings. My Red Hat sisters are truly angels. They encourage me with their lighthearted outlook and fun ways. My friend, Joyce, who lost her husband to Parkinson's at the too young age of 64 is a one woman support group. We do lunch and pour out our hearts to one another. It's been interesting to me to see that she still needs to do that - her John has been gone nearly three years. Other friends, old and new, support me in prayer and keep in touch with us by phone and e-mail. I signed up with Home Instead Caregivers on an on call basis. On 24 hours notice, they will send someone to take care of things for me. Had to do that yesterday. My back is giving me a fit and they will come today to give Tom his bath, change his sheets and clean his bathroom - things I just can't do this week. I know I'm forgetting someone - there are so many. Thank God for the angels in my life.
We buried my dad today after seeing him deteriorate from Alzheimers over the past 5 to 7 years. He was 84 and is in heaven, that's what he worked his life for as he was a minister for 40 years in the same church he started. Thank God is has a healthy mind and is whole again. Any advice for my mother, 83, who also has the horrible disease and keeps asking where her husband is? Telling her over and over again is so heart-breaking for the both of us.
Hugs LCochrane
Prayers Oreoo, mlcc520
Unlike the rest of you, my Mom does not live with us...I have 4 young adult kids, and there isn't even a closet we could spare in our small house. We all work and go to school during the day, and Mom needs someone with her at all times...in fact, she soon will be moving to the Alzheimers wing in the back of the assisted living place she lives in now, because she is rapidly sliding away from us. I thought your title was referring to all of the other people who help care for your parent. Allow me to introduce you to a few of my "angels": Theresa is the head care-giver, and she knows more about what the stages are that my Mom is/will go through than anyone. I often tell her that I'm not sure WHO she takes better care of: me, or Mom! When a new "phase" starts, like when I found that Mom had mistaken her garbage can recently for a toilet, and made a mess all over the floor, Theresa was the one to tell me how common this is, and how to deal with it. It isn't just my Mom who gets hugs and compassion from her. Then there are the lead care-givers, who help Mom to dress, sometimes multiple times a day, because she often decides to change, strips almost naked, then forgets how to get dressed, or where her clothes are. One of them recently was telling me about one of the other residents who told her she had no idea who that "nice man" was who had just had a long visit with her. Ozra, the caregiver, cried at how sad it is that this disease makes you unable to recognize your own child. My Mom is surrounded by people who hug her, who bathe and dress her. I go to see her 5-6 days a week, sometimes for a short visit, sometimes to sit and go through her photo albums with her, sometimes to sit with her at a meal, so I can cut up her food and be sure she remembers to eat. I can't NOT mention the nurses who are there 24/7, or the nurse practitioner who sees Mom often, and calls me if there are any changes to report. I lie awake often, worrying about what will become of Mom once her money runs out...fortunately, she was of the depression era, and she saved a lot, (mostly in envelopes in her house!) But I thank God everyday for the many people who help me to ensure that my Mom is well-taken care of, even though she is unaware of it. BTW, Mom lives in a Sunrise assisted living home.
Hugs Missy
I too had this shrangrala caregiving approach. If you've never done it before it's hard to know what to expect. I knew there'd be challenges, but I thought the positives would outwiegh any of the negatives. I envisioned my 3 yr old and my mom, who has moderate alzheimers, entertaining themselves beautifully and making wonderful memories for my daughter. And they do to a certain point, but my mom looses interest and becomes too tired quickly. I envisioned them on Medi-Cal (we live in CA - they moved here from Oregon), but we were denied. So the money I was counting on to help pay for their care fell through... Now my sister and I are thinking about having to move them back to oregon where they'd qualify for medicaid and get the the long-term care needs they need. Life never turns out the way you expect. Now I find myself worried that my daughter doesn't her social and playtime needs met, because we seldom get to leave the house. My parents dont like and dont want to go anywhere!
Hello everyone. Nice comments. I live with and take care of my 94-year-old mother. she's a sweetit, but has dementia and gets confused sometimes. I guess, especially at night maybe. She asks about where I am (using my name) like there are more than one of me, and I just remind her that I'm who she's talking about. I used to be younger, and I used to have that last name, but I went back to my maiden name, and I'm the person she's talking about. Sometimes she'll also wonder where my father is (he's been gone for over 20 years). Anyway, it's nice to have people to write to who understand what we're all going through. My sister has been coming to stay for a few days every few weeks the past few months. Big help! She lives in another state, so can't be here all the time. I also have nieces and nephews who visit sometimes, but they're all far away, so not too often. My brother comes to visit sometimes, but he also lives far away. So, the daily living is pretty much all on me. Overwhelming at times, but mostly, I have to remember to get enough sleep. Better do that now! Thanks for the opportunity to write stuff here. It helps. ;)
My father, who is 84, has not been "diagnosed" but he does have two brothers (92 & 95) who are in nursing homes now in advanced stage of Alzhemiers so I fear it is coming based on what I have been reading. He mentally wanders off, even in a crowd of people, he's getting very forgetful and becomes easily aggitated when he can't remember where things are. I know this has been elevated since he moved into a quint apartment next door to us, as now everything that was in the same place for 30 years is somewhere different, as I had to do all of the unpacking for him. He spends his days while we working with his buddies, but I'm becoming more and more concerned with his driving. He will answer his cell phone in lieu of watching the road. I've tried to stress to him that the call will wait until he gets stopped so we are working on that. He spends each evening with us until bedtime, then he will go home, but he is very lonely and looses interest in doing anything on his own as far as reading or playing computer games, which I've tried to explain to him will help keep his mind active and alert. I need to discuss a doctors visit with him to see where we are with this and what I should/should not be doing but just not sure how to approach it without hurting him so your story has been very helpful. I'll be following along with you and wish you luck. I guess we are both very blessed to have wonderful, understanding husbands that jump in and help out. I don't know what I would do without him and all that he does.
What I learned for the future ,from this season of caring for my Dad, is to be very agressive when I offer help. Sometimes when people offer to help me I am too overwhelmed to delegate, or to even think clearly from lack of sleep or stress, it would be nice if they were more proactive, instead of me waiting to decide what they can do. If i am at the store buying my own groceries, I will call and see if I can pick up something, milk, bread, prescriptions,etc. and drop it off on my way home, I would ofter to take their car to get oil changed, or run some errands, maybe take mail to post office, I would offer to throw out the trash, rake the yard, specific tasks that would relieve some of the caregivers burden, and I would never show up empty handed, I would bring anything, a homemade casserole, baked beans, with enough for left overs, a good home made stew w/cornbread,even if is store bought, it is awesome to not have to make one more meal, and it tastes so much better when someone else makes it with love, believe me it is accepted with much gratitude, in the future if someone tells me they are caregivers I will have to stop and give them a big long warm hug, and bless them. My heart will go out to them.
Hugs nannysangel, Braida
Elizabeth, I too am a caregiver --have been for 5 yrs, and have had been for 24-7 for 1 yr. Do not exspect to be perfect just because you are a RN--you are still human.It sounds to me like you have a OUTSTANDING husband--that alone is a miracle---but I too have one. The lady I care for is soon to be 94 is legally blind and has Parkinsons with 50% dementia. But she is so sweet! I am blessed--I have a sister who is RN to help relieve me--you see this lady has no living family except 2 nieces on the west coast. But trust me you will look back on this someday and say "I did the best I could" and you can do that with no regrets. I can't speak for you but my husbands life and mine has not been the same the last year as we once knew it! It is confining, and above all I have actually found patience! Hang in there, it could be a long haul! Thank-God for friends! Carol Carter if you would like to e-mail me my e-mail is cccarter2005@att.net God Bless!