Have any questions about how to use the community? Check out the Help Discussion.

Father in hospital, begging me to set him free

corvuscallosum
corvuscallosum Member Posts: 2
First Comment
Member

This is my first post here. My dad was diagnosed with Alzheimer's disease 3 years ago, and I have been his caregiver ever since. I am his sole caregiver, and we have no family nearby. He had declined to the point recently where I began arranging a room in a nearby memory care facility for him. The weekend before his scheduled move-in (last weekend), he had a catastrophic fall in his bedroom. He hit his head on the wall. I had him taken to the emergency room where it was determined he had a severe UTI. Unfortunately, I was in the middle of finals week and was very busy. Had I been able to spot the signs of a UTI before the fall, I might have been able to prevent it. Worse, he had fracture a bone in his neck. The fracture, in itself, is not life threatening and does not require surgery, but it does require hospitalization while they treat the UTI, and possible stay in an occupational therapy facility before being discharged.

Tonight, I received a call from the nurse that he wanted to talk to me on the phone. He begged me to come get him, saying he had the right to live like a normal person, and then said he had never expected me to side against him. I tried explaining to him why he was there, that he fell down and broke a bone in his neck, but he couldn't remember that long enough to end the conversation. He'd go right back to not understanding why he was there. I felt like crap. I can't bring him home. I don't even know if they would let me. He's not medically well enough to be discharged.

I told him that I would try to see what I could do and asked him to put the nurse back on. I asked them to give him something to calm him down, and they were already in the process of doing so.

I'm afraid I am going to be in for a rough couple of weeks and/or months. In the hospital, in the occupational therapy facility, and then in memory care, which is where I intend for him to go after that. I know that I am not able of providing the level of care he needs. Not all by myself. Even home-care seems like it would not be enough.

I'm sure this is a common experience for love ones with Alzheimer's, especially caregivers, so I'm asking if anyone has any advice on how to deal with it.

George

Comments

  • towhee
    towhee Member Posts: 642
    Eighth Anniversary 500 Comments 100 Insightfuls Reactions 100 Likes
    Member

    This extra confusion of your dad comes from the illness, the fall, meds used to treat same, and being in an unfamiliar physical location. It is usually called delirium, or hospital delirium. It will take time to clear up and he may not get back to the level he was at before. If he has glasses or hearing aids make sure he has them on in the hospital and has a couple of familiar things with him like a small photo album and familiar throw. Hospitals and rehab centers are not really set up for dementia so if you can afford it having some private care there to supplement your visits would be helpful.

  • JesseLee
    JesseLee Member Posts: 42
    10 Comments 5 Care Reactions 5 Likes
    Member

    Tam Cummings (book + online resources) says by the time you LO is at this point, a single caregiver is doing the work of 14 (?) people. I can imagine that convo was very painful. You are doing the right thing though, for him and for you. He may fear you won't visit and such. You will actually have better quality time with him, knowing he's safe and not managing all the other things. I'm sorry, wishing you the best.

  • JesseLee
    JesseLee Member Posts: 42
    10 Comments 5 Care Reactions 5 Likes
    Member

    Also, Emma Heming Willis' book (wife of Bruce) is very helpful and makes the point that if you run yourself into the ground, your LO still has dementia and now 2 of you are in a bad way,

  • corvuscallosum
    corvuscallosum Member Posts: 2
    First Comment
    Member

    Thank you. I appreciate the reading recommendations. The point of the importance of self-care is one that I'm always aware of on a logical level, but accepting it emotionally is the hard part. My feeling brain doesn't always listen to my thinking brain.

  • April23
    April23 Member Posts: 207
    100 Comments 25 Care Reactions 25 Insightfuls Reactions 25 Likes
    Member

    This is my dad's story almost verbatim. It's heartbreaking and I am so sorry.

    Falls and UTIs go hand in hand in PWD. You would not have necessarily been able to spot the UTI as they often present differently in PWD, sometimes with no symptoms at all. Falls were really our first sign.

    Something to understand is that once they fall like this, they are fall risks forever. While in rehab, he may not understand why he is there and may continue to want to walk, get up, etc. and not remember that he can't. I would ask for a urology consult while he is in the hospital or follow up once he is discharged. Urinary issues in elderly males with dementia can get complicated quickly. Also talk to the hospital social worker who can aid with the next transition.

    He will most likely not understand why he can't go back home. PWD can't be reasoned with for the most part, they don't understand the extent of their condition and no amount of explaining will make it so. He may be angry at first and it will take time to adjust to the MC. Put the burden on the doctors, tell him you have to follow their recommendations, it's the law, etc. My dad went to hospital, then rehab, then MC and while devastating, in some ways it did make it easier.

    You have cared for him admirably but it is definitely time to let someone else take over as his needs will most likely be more than you can manage at this stage. You will still be his caregiver and advocate, just in a different role. Come back often for support, this is a great forum to receive feedback and advice. Hugs to you!

  • Quilting brings calm
    Quilting brings calm Member Posts: 3,264
    1,000 Insightfuls Reactions 1,000 Likes 2500 Comments Fifth Anniversary
    Member
    edited March 25

    Please do not beat yourself up about the UTI or the fall. Even doctors miss diagnosing UTIs. I know because that’s exactly what happened with my mom. She was living in what is commonly known as a ‘snowbird’ area - lots of elderly people. The doctors there couldn’t diagnose a UTI even though we repeatedly told them she had one. We had to move her back to our home state - where she was diagnosed with a UTI within an hour of being seen at the ER.

    A UTI in the elderly often presents with confusion etc- hard to determine when your loved one has dementia. Falls happen especially with the elderly and the frail.

    I’m glad that you recognize he needs more care than you can provide.

  • tootz
    tootz Member Posts: 17
    10 Comments 5 Likes 5 Care Reactions
    Member

    As I read your post, I could feel your despair. It looks like so many here have responded with help. I’m not sure what to say other than I am in this with my Dad too and it sucks. I am sorry that you are in this without family support but like many here said, you have to put the oxygen mask on before you can help your Dad. I often ask myself, “what would Dad (from before his Dx) tell me to do”. Sometimes I can’t connect but other times I hear his voice loud and clear. I wish you an easier day today 🙏

  • JesseLee
    JesseLee Member Posts: 42
    10 Comments 5 Care Reactions 5 Likes
    Member

    It's a process for all of us. You're a caring person and your pops is lucky to have you advocating for him.

  • Grenah
    Grenah Member Posts: 55
    10 Comments 25 Care Reactions 5 Likes
    Member

    My mother is a fall risk, having had a couple resulting in broken bones and frequent UTIs. She rarely has symptoms for the UTIs. When finally diagnosed she is at the point that she has had so many and given so many antibiotics that she is becoming resistant. The last antibiotic was IV (the only option) and had both mental and physical side effects. We should have left her in the hospital. We requested a sitter to be with her 24/7 but they used a bed alarm instead. Someone neglected to turn it on and she was out of bed with the IV pulled out before the nurses got to her. Even with the alarm by the time they hear it and get to it she has already gotten out of bed. I felt uncomfortable administering the IV at home but the experience with the hospital did not inspire confidence. The side effects were really beyond my capabilities. As far as the physical rehab goes, just keep telling your father that the facility will not release him until he's better. They don't like it or necessarily believe it but that's the truth. On one level it sucks but on another it gives you a little breathing room.

  • ARIL
    ARIL Member Posts: 552
    500 Comments 250 Likes 100 Care Reactions 100 Insightfuls Reactions
    Member

    I am several years into this journey, and my initial response to your post was to see how caring you are and also how sensible and realistic you are. You are recognizing what is possible and what is not, and that will benefit you and your dad in the long run. Yes, you’re in for some hard times, but be assured that you can come here anytime for support and understanding. We’ll go through it with you.

  • terei
    terei Member Posts: 976
    Ninth Anniversary 500 Likes 250 Insightfuls Reactions 500 Comments
    Member

    I would just practice repeating ‘I know it stinks, Dad, but this is doctor’s orders and you have to stay til you are better. There is nothing I can do about it, I’m Sorry’. No further ‘explanations’ are going to be helpful. He is in his own reality now and probably has no understanding as to his limitations and the other demands in your life. You are doing your best…keep reminding yourself. He should go directly from rehab to MC by the way. I caution not to bring him home or you will have even more complications and stresses for you both.

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