My husband has been moved to a rehab facility - Part II

[cair124]

As I mentioned, we knew this was coming. Husband has Charcot-Marie-Tooth disease, meaning he has extreme weakness in his limbs and can't stand unassisted. He also has epilepsy, is legally blind and has macular degeneration plus other eye issues. All of this has been ongoing and worsening in the 26 years we've been married.

We married late in life -- I was 38, he was 45 -- and lived alone before then. Now I'm facing living alone again, while also worrying about finances, and helping him as best I can from a distance of sorts. One thing in the facility's favor is that it's only about 10 minutes away by bus, so we can see each other fairly frequently and of course we can talk by phone as necessary. My problem is that I am having a very hard time managing by myself. Without having someone else to care for, it's really difficult for me to care about taking care of myself. I am trying to stay fairly positive by saying some costs will go down -- he won't be at home all day so the electric bill will go lower, the cost of food will be lower as well. One thing I know will be necessary is to have maid service at least once a month because I am a HORRIBLE housekeeper. He really was the one who made our condo livable. So, yes, I'm really struggling without him, and that includes emotionally.

There is a sense of relief that someone else can assume the burden of helping him 24/7, but the hardest thing is that I'm discovering how lonely I am. I don't feel I can get a pet (cat) as long as I have to keep working -- I have five more years minimum until I can retire, and I don't want more than one cat now that I'm older. 

What I really want is to have a good cry, but I just can't seem to let it go. Every time I talk to my husband he asks, "How are you doing?" and I give my standard answer of "I'm hanging in." 

[opetrus]

Hello, @cair124 Thank you so much for sharing what you are experiencing in your life during such a difficult time. I have worked in LTC/Rehab/Residential/Nursing Homes and Hospitals as a Certified Nursing Assistant for many years. While I have never provided care for someone struggling with Charcot-Marie-Tooth Disease in particular, I have provided hands on care for countless individuals struggling with either the same afflictions (Epilepsy, Visual Impairments) and/or countless other harrowing diagnoses that substantially inhibit one's ability to live and function independently. Never take for granted your ability to carry out what is known medically as an Activity of Daily Living. The loss of one's ability to ambulate (walk), feed, bathe, dress and toilet themselves, however acute and severe, or progressive and chronic is far more profound than I believe is measurable. Common are the feelings you are experiencing as the loving wife, as I've heard them echoed during my tenure as a caregiver while struggling to ensure the patient and their loved one's feel like their concerns/worries have been fully addressed and their needs adequately tended to. I'm grateful you report some positive feelings surrounding the burnout relief since 24/7 caregiving no longer falls completely on a single individual's shoulders. Also grateful to hear that he is close by, so that making regular visits isn't such an issue. I am terribly sorry to hear you feel so lonely, as so many other Americans in our nation are saying at the moment. You don't need anyone's permission to cry about your circumstances, to do the necessary grieving anyone would over the dramatic change in routine and certainty. It is not easy for anyone - prepared or not - to deal with these changes once they happen. Sitting in that home alone likely reminds you often of who is no longer sharing that space with you, cleaning, or chatting, making his absence that much more profound and painful. Grieve and look for ways connect with your community. Engage in the world around you, learn new things, reach out. Those that seek, find. Librairies are fantastic resources to explore, many offering regular, free or low-cost social activities in which you socialize. Please, treat yourself with the same sort of patience and kindness you would expect your husband's caregivers to offer him during his most intimate moments. Joining a cheap gym is another way to get out of the house and involved with some other people, besides being good for your physical and mental health. Journaling is a great way to express your feelings safely. If you've always wanted to adopt a cat, please don't let work deter you from adopting a furry creature in need can bring you so much joy. I have a cat and currently work 12.5 hour shifts, full-time. She's about to turn 13. While I would never recommend adopting any animal unless you are prepared for them, please don't let a full-time job rob you of something that could help. Cats are indeed, far less intensive than dogs. If you're not ready to commit to owning the cat, full time, plenty of shelters are looking for FOSTER families, in which you would agree to care for a cat for a limited amount of time. Your local animal shelter, adoption facility, or welfare agency also probably desperately needs volunteers. This eliminates any concerns of housing the animal, while doing something positive for you and the shelter animals in desperate need of love, time, attention and care. Continue connecting with others, permit yourself to be yourself around your husband, and bless you for caring about him so much.