-
Having your partner as a caregiver
Since ALS is more prevalent among older adults, chances are higher that the ALS patient is one half of a married couple. Suddenly, roles change, and instead of a partnership, the relationship evolves into that of one caring for the other.
But does the relationship change? Does it have to? Have you had experiences having your partner being your primary caregiver? What tips do you have for newly diagnosed “couples?”
-
5 Replies
-
Because my husband is older than me, we always thought I’d be taking care of him in our senior years. But that reversed when I was told I had ALS. Now he is my caregiver and has been for the past 15 years. I’d say that our relationship has grown even closer. Although he had to learn how to cook and do laundry, and I had to learn to relinquish those duties – as well as verbally teach him how to do them.
Here is a blog post I wrote with helpful tips for anyone in the same situation:
https://alsandwellness.blogspot.com/2021/12/how-to-coach-your-caregiver-make-it-ham.html
-
I have an issue that I’m wondering if anyone is or has experienced. I’m 68 and been living with slow processing ALS for a couple year. Only lower body affected.
My caregiver is my wife who essentially volunteered by default. She doesn’t want any strangers in the house Now the kicker, she is a text book narcissist with me as target. She can snap at any moment over any benign thing. Around Everyone else besides family she is very pleasant and mineable. A completely different personality than around me. Family has experienced a little of her personality changes but they have never experienced or witnessed what I endure. My wife doesn’t go full blown on family since she wants kids and grandkids in her life. In the heat of some outbursts she’s told me several times that she wish I was dead already. Other times she’s very helpful to me. My family thinks I’m greatly exaggerating the situation.or lying so they think I’m just being mean so they think I’m the bad person. I dont need full time care, but need a little help every now and then, so having anyone come to house isn’t needed as of now. It’s hard enough emotionally, mentally and physically for me to be dealing with ALS without a narcissist wife caregiver. Her rants are very personal and hurtful remarks and can keep me down the sewer for days. I’ve been seeing therapist and psychiatrist for years. It’s a double edged sword. Anyone else have a narcissistic spouse caregiver.
-
-
Hello,
My name is Scott Miller –
My wife got her tracheostomy in February of this year I have been bed side every night expect for one hospital in Washington DC . We live in Myrtle beach – hit trench done in Charleston S.C. . Now we in only rehab facility that would take her in Alexandria Virginia. Here I can stay with her 24 hours a day so since few hospitals been here since July – just thought I see if I could talk with someone going through same thing . I will find time to set up pictures profiles line you did – if you feel like talking I’m willing .
Thank you for your time .
Scoot Miller
-
Hello Scott, your dedication and caring for your wife is wonderful. Many hugs to you both. I’m sure someone in our forum will share their similar rxperiences with you. Meanwhile, have you checked in with the ALS Association in your state? They are good at connecting patients and caregivers with each other.
-
-
Thank you so very much replying.
Thank you for advice – not sure I have registered with South Carolina . I feel I will be here in Alexandria, Virginia.
Thought I just give this a shot meeting friends who we can chat with –
Thank you for your kind words .
Scott
Log in to reply.