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Communication
My husband was recently diagnosed in June. We are having such a difficult time discussing our future. I don’t know how to approach it, I don’t want him to feel worse than he already does. We live in the country, with 9 acres of land. I know I won’t be able to keep up our home, it takes him 6 hours on our riding lawn mower. I know we will have to put our house up for sale. I just don’t know how to talk to him.
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10 Replies
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Ann – – You are not alone with this problem. Many of our forum members have lived their lives on ranches and farms – – and then had to move off of them due to their ALS. I hope some of these members will chime in and share their thoughts and experiences.
Here is a link to one of our members who was featured during ALS Awareness Month who shared somewhat the same situation as yours: https://alsnewstoday.com/forums/forums/search/?bbp_search=john+russell
Are you in contact with your local ALS Assoc. Care Coordinator? They can help you prioritize the steps of: you and your husband accepting and learning more about ALS, and, figuring out what to do next for home-life accommodations or modifications.
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Biggest help for me as a pALS was meeting other pALS and understanding the disease. I read and researched all I could. It allowed me to be very comfortable talking about it. I went to support groups. They were ok but very few people there. The biggest personal help for me was the PatientsLikeMe site where I see input on everything including daily life from a lot of different pALS. People talk about everything related to ALS but even more about just living their daily lives. It might help your husband be ready to talk more.
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Ann, my husband was also diagnosed in June. While we do not have 9 acres to take care of, we were “snow birds”, spending half our year in Florida, the other in Pennsylvania. One of the first questions he asked on our way home from the diagnosis appointment was “where do you want to live”? We both loved the life that we had and never in a million years thought that we would have to face this question so soon. For me the answer was simple…we grew up in PA, that is where the majority of our family is, including his 89 year old father. We are now in FL, packing up what was our dream home. We have sold many of the furnishings and donated just as many. But it is still hard to do. After a few complete breakdowns and crying episodes, it is going a little more smoothly. My suggestion to you would be to let him know how you feel. If you don’t think he is ready to discuss it, do it in steps. Start by expressing your concerns about the up keep. Maybe suggest (when he is ready) that you sell a few acres to help eliminate your worries. But don’t rush it. Take the time to process all that is happening to you both. I wish you luck, and strength. And lots of support from family and friends.
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Bill – – sites like Patients Like Me are good for allowing members to post their daily/weekly data or experiences. However, it is prudent to be aware that this site does sell member data to its sponsors and partners.
Here is their disclaimer:
https://support.patientslikeme.com/hc/en-us/articles/201245770-Does-PatientsLikeMe-sell-my-information-#:~:text=Yes%2C%20we%20do.&text=To%20do%20that%2C%20we%20take,products%20or%20the%20disease%20market.
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Thank You for all your advice. I Do know we need to make some big decisions but you’re right. I need to approach him slowly. He really doesn’t talk to me about his illness and therefore I keep it to myself. We have a very strong marriage and a big family. We will take each day, be thankful to our Lord for giving us this day and count our blessings.
Thank You for your kindness. God Bless you and your husband. -
Ann, you have a support group here! Please let us know how you are doing, along with how your husband is doing.
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Ann,
I was diagnosed on March 9th 2020. I had in the back of my mind suspected something like ALS back a year prior and still I wasn’t prepared.
It takes a toll on you mentally – I am a 55 year old woman who has always been active and stayed in shape. I ran rings around my grandchildren and worked a very physical job often 10 – 12 hours a day.
My ALS started with the speech – by this past Dec. I had a sore hip and noticed that I wasn’t walking “quite right” – I also noticed that lifting things especially over my head seemed more difficult.
Then in March I got the official diagnosis – I cried for almost 2 weeks straight (my doctor put me on an anti-anxiety pill to help with that) I became depressed and stopped eating regularly – I lost 5% of my body weight in 2 weeks- I thought about “ending it all” – I felt that I didn’t “deserve” to be using resources (food, money etc) that my family could make use of. I didn’t want to talk to or see anyone. I felt guilty having to place another burden on them. I was always the rock and the “doer” – now I was the one who needed help and that felt awful.
My husband was very supportive – he gave me space but never left me alone. He held me while I cried, he held me when I wasn’t crying. I have a very difficult time speaking so I have to use a device to communicate, it was texting or writing on paper – slowly about a month or 2 after my diagnosis, I was able to start sharing with him how I felt and what I was afraid of.
I still can’t share everything as it happens- I need time to process it myself – but the processing happens faster.
In 5 short months, I have lost the ability to pick up anything heavier than 2 lbs. , I can’t wash or brush my hair, often my hands shake and I can’t carry even a cup of coffee; but, I can still walk and drive and be independent – that is what I focus on being independent – if I can do that I will be OK.
We focus on what I can do – my husband reminds me of what I can do and seemingly instinctively steps in to assist with what I can’t do.
I found that writing my feelings and fears down helped. I could give them to my husband and we could talk when I was ready. Because I can’t speak very well – he is my voice with my doctors – so he knows what I am going through.
What you can do is remind him everyday that you love him and that you are there for him when he is ready to talk. My husband points out the positive items (last year we rented instead of buying a home because of a snag) he points out that it’s good that we waited- so we can look for something better suited to us now.
I still cry and have difficulty with all the changes happening- but now I try and share with my family. It takes time.
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We have rather less land, but when I was diagnosed I had already let half of it revert to nature – ie rewilded. I then built raised beds with paths wide enough to take a wheelchair and we now have a bumper harvest that I will be able to access when my mobility deteriorates.
My wife’s parents have 6 acres which they mow. I keep asking them why. My 93 yr old dad still rides his mower. Why? Just let it go, make accessible routes through it, welcome in nature.
I guess if your income comes from the land, it may be difficult. But so many of us think we’re meant to tidy everything. ALS has given me cause to question many aspects of the way we live. Perhaps we need to live more lightly on the earth.
David
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So many great replies and let me add mine. With ALS there are so many unknowns when it comes to how the disease will effect each individual. The reality of how awful this disease is does take time to process as so many have said before me. I also want you to know that not everyone takes the 2 – 5 year progression path. There are many of us who progress much more slowly. Don’t give up hope for a slower progression and be patient as I am sure your husband will be ready to deal with whatever the hard decisions when necessary. I wish you and your husband all the best.
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Thank You for all your wonderful advice. So far we are going to stay in our home. My kids are going to help us out with the lawn.
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