New here, need caregiver advice.

KathyF1

My husband is 68 and has Alzheimer’s, I’m not sure what stage but he needs my support constantly now. He can’t make a phone call or turn on the TV without my help, and needs help choosing the right clothing. He struggles with words of course and at times is delusional. (He thinks he was responsible for starting the Jan 6th riots). For a couple of years now he has become anxious when we are not together. For the last 6 months I am with him all the time. I’ve promised to always care for him (even though most of the time he is in denial about his illness). He is very good natured and so far his personality is basically the same. We live on a large farm and he still helps me feed the horses. My fear is that as things progress, will I be able to do what is needed? We live in a rural area and I’m not sure what options are available for in home assistance. (No, I haven’t checked on this, I may be a little in denial as well). I’ve had friends advise me to sell the farm. We also have a home in Florida and I know there would be more help available there. So. . . I’m hoping to get advice from others on this forum who have been in my shoes. We are very isolated here. It does feel a little scary at times when I wonder how I can get support. We haven’t lived here that long. We do have one couple who are dear friends and can be counted on but other than that we have no one. This disease is isolating, as you know. Establishing new friendships is almost impossible. I literally never leave his side ( yes it’s driving me a little crazy) and of course we can’t socialize as a couple. Thank you all for your advice!

Iris L.

Welcome, Kathy.  Your husband is not in denial.  PWDs (persons with dementia) have anosognosia, which is a characteristic that causes them to truly believe they are fine.  If you confront them with reality, they will resist and become upset.  So don't confront him.  You will have to learn work-arounds which the members will tell you about.  They will tell you a lot of things.  Please read a lot of threads and keep posting.

Iris L.

MN Chickadee

There is no one size fits all approach as to how to set up your life or plan for care, but I can tell you what I would do. I would definitely sell the farm and downsize. Eventually he will be even more work for you, hard as that is to imagine and there won't be enough of you to go around for the farm chores and his care. Add the isolating rural aspect where it will be hard to bring hired help in - I would not want to be in that position. It's nearly certain with Alzheimers that incontinence and being awake at night will come sooner or later. That is usually what zaps the caregiver's energy. If it were me I would move now while he is still someone aware of what is going on and mobile. Some people wait until it's too late and then moving the person requires medical transport, which can get very complicated for long distance. You likely can't involve him in any decision making. His brain is too compromised to process the logic and reason behind this. You would have to make arrangements and finesse, soothe, use therapeutic fibs, and work behind the scenes to make the transition easy on him. Maybe it's just a "visit" to the other house. I would make a plan and start taking the steps. Hire a realtor, line up a moving company who can pack for you, plan the road trip. I would move to wherever you will have some support. If you have friends and family at the FL house who you can count on then maybe you go there. Having someone who can cover you so you can go to the dentist or get some respite now and then, come over in an emergency etc is really important. A community with resources is even better, such as adult daycare, numerous memory care facilities should you need them, support groups etc. And if you plan to keep him at home you will definitely need to be able to hire help. No one can do this 24/7 for years. Once you land wherever you are going you would want to consult an elder law attorney for financial planning and legal documents. That way you have a plan to pay for his care while protecting yourself if it ever comes to that. Things can change drastically with dementia, you just never know what might come up. 

Many people wait too long to do these things. Suddenly they are taking these steps because of a crisis, which makes it a million times harder. If it were me I would act now with purpose, thought, and the luxury of time. 

toolbeltexpert

KathyF1 wrote:

Welcome Kathy your in the  right place for good sound advice and caring compassion, sorry you have to be here as well. I too am fairly new but the members here are full of experience. Keep posting we are all in this together.

May flowers

I’m sorry you have such a tough choice. 

DH and I are caregivers for my FIL. We have a hobby farm - we are not as rural as it sounds like you are. I know that in stages 6 and 7 (we are in 7 now) there is no way I could do farm work and care for my FIL by myself. If I were alone, I would need a 2-3 hours a day caregiver to free me up to do farm-related things. I am in my mid-50s, so things might be very different 10 years from now.

Because I love my farm and garden, it gives me so much joy, I would have a hard time giving it up until I can’t physically do it anymore. It is a wonderful outlet for stress as well. If I had the means, I would consider hiring a farm hand with the heavier chores. 

The people that owned this property prior to us sold it when the husband was diagnosed with dementia in his 70s. The wife wanted to keep it, she had horses and gave riding lessons, but he was worried it would be too much for her. He passed away a few years after the move. She ended up buying another farm and horses again. It was too much a part of who she was. She has help of course, but last I heard she is still giving lessons and riding.

Stuck in the middle

Welcome, Kathy.  

My wife's condition is similar to that you describe.  In your shoes, I would think I was probably within a year of needing the kind of help you have to pay for.  Friends are priceless, but you can't expect them to stay up all night with your LO so you can sleep, for example.

We have simplified our lives.  One house, one car, etc.  I employ a housekeeper and a lawn maintenance service.  No regrets.  You and I can buy more horses after this is over.

M1

Hi Kathy and welcome.  I also live on a farm in a rural area, 150 acres, but we do not have livestock.  Nonetheless, there is always work that needs to be done.  In the past, my partner took care of most of it--she was very adept--but no longer.  We are blessed with a wonderful neighbor who is a mechanic and can maintain most of the equipment, and we have contacts for some of the heavy outside chores,  but finding regular help has proved virtually impossible.  That said, because there is no livestock there are some things that can and must be just let go for the time being.  I bushhog the fields in season (about 60 acres), keep the lawn mowed around the house, and keep a vegetable garden, and those things keep me sane.  But things like building repair on the chickenhouse, grading the driveway, fixing a spillway that was damaged by flooding are not critical and aren't going to happen right now.  We recently paid a significant chunk of change to have some timbering done, had the fence fixed--those things I can hire out and don't pose a covid risk since they are outside.  

Our window for selling and downsizing seems to have closed; it would be so disruptive for my partner now that I have been loath to do it and am more or less committed to staying here until she dies (she'll be 81 next month).  We putter along and have not needed ongoing help yet--though the day is coming.  My partner has not been delusional, which helps, and she has such loss of executive function that she gets into less trouble now than in the past.  I recently joined an online listserve neighborhood group as another mechanism for finding help-you might investigate whether there is one in your area.  Our farm coop has also been a good resource for farm chores; I'm more concerned about when I need companion help for her, but I haven't really pushed the envelope on that yet.  The day is very close when I won't be able to leave her alone, and I have grandchildren nearby that I want to visit, so finding a reliable companion is currently my biggest challenge.  I haven't pushed it because covid is still unacceptably high in our area, but I see the need by the end of this year.

If I were in your shoes and you have an opportunity to sell and move to your other house that is an environment your husband is already familiar with, I think I would take it.  Like Stuck said, horses may come back into your life at a later date.  Good luck.

Noreen Bridget

Hello. I just joined today. My father has dementia and "parkensin-like" disease. My mom is the primary caregiver. I have 5 siblings and we all try to help but we don't  all live in the same state or city. Only one sister lives in the same city. We all try to make sure one of the 5 siblings that live out of state visits once a month to give my mom a break. The reason I am reaching out is to find ideas of activities for my dad. My mom asks him to do chores around the house. He has always been a very creative person doing woodworking, carving and painting. With the shaking hands, he can't safely do the carving or the woodworking like he would like. He doesn't seem to enjoy painting because he gets frustrated with the shaking hands. Any suggestions of art activities? It breaks my heart that everything he loved doing has been taken away from him or it causes frustration for him now. Thank you in advance for your help and sorry this is a long post.

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Stuck in the middle

Welcome, Noreen.

I was never good at arts & crafts and can't suggest anything.  However, more people will see your question if you start your own thread, and some members of our group are pretty "crafty."  Just click the "add topic" button near the top of the page.

jfkoc

I know that I would make the move to Florida. What are you going to do when you can not get your husband up from a fall. How are you going to go to the market, the Dr, the Dentist? Additionally going back and forth is going to take a toll on your husband.

Welcome Noreen. I hope you will start a new thread so that more members can meet you. My husband was diagnosed with Parkinson's then LBD so I have some idea of what you are facing.

JD58

Thank you for putting a name to my dad’s belief that he is fine, it is maddening for me to deal with him when he refuses to accept care - like moving to one level living so he and my elderly mom don’t go up and down the stairs for the bedroom.  He is 90 and I am worried constantly about them both - if my mom goes down, he will be completely unable to call me or get help. Frustrated and battling siblings with pooling our $ to provide a private nurse to come in to bathe him. Older brother said he will move in with them, but other two siblings are not for that due to concerns of getting him out of their home once they pass. I am their health proxy and live the closest to them, I am the one that needs help letting the natural consequences happen for my elderly parents.  This is so mentally overwhelming, I had no idea.

So glad I found a community to share with. Thanks for being here.

my3sons2.0

My parents live in a rural area as well. There aren't as many resources and you need to think about the future. Things are going to change and i'm surprised your husband's doctors haven't stressed to you the importance of getting your affairs in order. Planning ahead will serve you well. You are going to need lots of help, more than one friendly couple can provide.

KathyF1

Thank you all for your replies. I know I have a hard decision to make. Praying for wisdom! I know this will probably be a long hard road and it will be critical to have support. Thanks everyone, it is a comfort to know there is access to good advice with this forum.