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A series of changes and more isolation for me as sole caregiver

Mitsu2
Mitsu2 Member Posts: 34
100 Care Reactions 10 Comments 5 Insightfuls Reactions 5 Likes
Member

This is just me expressing feelings the only way I can right now. This week has been challenging. My husband's Medicaid application was approved, but the part that funds home and community based services is still pending. I applied in August, and I was told that it will probably be February before we actually get any services.

His sleep patterns have changed. I get up early with our two dogs, and he used to sleep for an hour or two later. That was my time for having coffee, reading emails, paying bills, taking a shower, and just getting ready for the day. Now he's up early and no naps, so I've lost that time. He gets suspicious when I'm on the phone or computer, so I'm very limited in communicating with the outside world.

During a neighborhood walk, my husband didn't want to wait to cross the street safely and would try to rush across when traffic is coming. Then, he refused to turn down our street, and tried to get into neighbor's homes, ones that have security systems. I could tell by his level of anger that he would've shoved me if I tried to block him. He went down an alley and tried to get through back gates. I got him headed toward home, but when he saw a young couple in their driveway with their front door open, he tried to go into their house. Fortunately, they were very kind and understanding. The young man gave him a hug and said, "It seems like you're having a hard day, your house is just down the block there."

Now I'm avoiding the subject of walks and don't feel at all confident taking him out of the house. It's only been a couple of days, but I feel really trapped in the house and yard. It's been a long slow progression starting about 14 years ago. This is also almost exactly one year since he became unable to stay alone at home, even for brief periods of time. I ordered grocery delivery today since he said strange things to people during our last trip.

On top of that, my very dear eight year old dog was diagnosed with lymphoma this week. I have an appointment with a veterinary oncologist, but the earliest appointment I could find is on 12/31. I'll have to take my husband to every appointment since I have no one to stay with him. But sadly, it's progressing so fast I'm not sure she'll make it that long.

I emailed his doctor about recent changes and her opinion is that it's time to start looking at facilities for him. Fortunately, his new medical team has social workers to assist and I have some limited family support to look at placements. Not feeling the holiday spirit right now.

Comments

  • Jgirl57
    Jgirl57 Member Posts: 800
    Fifth Anniversary 250 Likes 500 Comments 100 Insightfuls Reactions
    Member

    oh my! Sounds like outdoor walks in the neighborhood might now be history. We no longer walk in local parks because my DH wants to get into everyone’s business and will not let a conversation end. Not getting your time alone at home since his sleeping pattern changed is frustrating. I do try and stay up an hour later than mine. I always tell him I am going to finish up the dishes after I get him settled in bed. I hope your home services come thru soon. Sorry about your dog and it is never hurts to check out facilities .

  • SDianeL
    SDianeL Member Posts: 3,175
    1,500 Likes 1,000 Insightfuls Reactions 2500 Comments 1,000 Care Reactions
    Member

    so sorry. We understand how you feel. Hope you get the help you need. Hugs. 💜

  • trottingalong
    trottingalong Member Posts: 964
    Ninth Anniversary 500 Care Reactions 500 Likes 250 Insightfuls Reactions
    Member

    Oh my. You do have your hands full. Like you, my morning quiet time is when I get things done.

  • Call me Gram
    Call me Gram Member Posts: 132
    100 Comments 100 Care Reactions 100 Likes 25 Insightfuls Reactions
    Member

    My heart goes out to you. 💕

  • jgreen
    jgreen Member Posts: 286
    250 Likes 100 Care Reactions 100 Insightfuls Reactions 100 Comments
    Member

    Dear @Mitsu2

    So sorry you are having such a bad week! It is good your physician is responsive to your emails. Perhaps some medication adjustments could help with DH’s recent behavior changes? That could help relieve you a bit while you wait for Medicaid approval and possible placement.

    I am not where you are at this point in time. But I have seen several terrific responses in other posts that list questions and things to look for when visiting facilities or interviewing for home-care. You might see if you can find some of those responses and create a list. And it is great you have family willing to help. Visiting and assessing care centers would be a great ‘job’ for them. At least as a first pass so they could narrow down the field for you as you make the final assessment and decision.

    Hang in there! Come back and vent as often as you need. Sending you are warm hug! 💝

  • Goodlife2025
    Goodlife2025 Member Posts: 297
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    Member

    So sorry for the new limitations on your walks. I hope a solution is found soon. I really count on the time my spouse is sleeping. Not sure what I would do without that time.

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more