Well… When mom had the stroke I knew things were going to be changed. But you always hope that things will go back to how they were, no matter how unlikely it will be.
Since mom got home for good on April 15th I’ve realized that while it is possible that she may improve (she certainly is adamant that she will “get better”) that it is not likely to happen anytime soon, if at all.
Her memory is fine, but she’s not great on the details of the last conversation… she does remember things, but it isn’t “complete”… her mind seems to wander off as you are answering her questions… then she asks you again. But, if you are firm and make her listen, she does remember. I think it is more a lack of attention than a real memory problem… but, it is a frustration. She may improve or she may not.
And she’s impatient… not mean or nasty, but anxious and worried… if I don’t carry her water bottle to her room when I am moving her there she starts to panic… it is a little disconcerting for me. She calls out for me with a panicky tone in her voice if she doesn’t see me in the room… even though I was there five minutes ago. I rush into the room thinking she’s fallen or something and she just says “I though you were gone.”
She needs assistance with EVERYTHING 24/7. The only reason the hospital released her to come home was that I called and asked my aunt (one of mom’s younger sisters) if she could come and stay and help with mom until we could get everything sorted out regarding home care.
Mom was released on April 15… I had to work at the theatre over the weekend and then work three shifts at the store… so I made an appointment to meet with OUR doctor for the first time since the stroke on the Wednesday which was my FIRST free day, then made an appointment to meet with the Home Care Case Manager at her office for Friday (Apr 23)…
Meanwhile… my aunt had already made arrangements to go home (she’s leaving on May 2nd no idea what time… she hasn’t told me) before we even had the meeting with Home Care to find out what services we could access to arrange care for mom when I’m not home.
I am … well… frustrated … as when I asked for her help I thought she was willing to be here for mom until we got a permanent solution in place. That’s what I had asked her if she could do. And I got on getting information and take the steps required as soon as I could! Now we are basically in an “emergency” situation…
Luckily Home Care has made an exception and will provide aides to come and care for Mom starting on May 2nd (as I have to work that day!) for that week ONLY. It is an emergency as we have nothing else in place yet… the Respite Program is NOT for being there while you are at work, it is for giving you a break from the stress of being a caregiver.
I called my sister to see if she can come up for a few weeks until we can get something in place but she’s waiting to hear about several job interviews, etc. She was supposed to call me back this evening (she called earlier and mom told her to call when I got home…)
There is a program for Self-Managed Care which you can apply for that provides funding to you for a caregiver but you have to hire, train, fire, do payroll, deductions, etc. yourself. We did the paperwork this morning with the Home Care Case Manager to apply for this. HOWEVER, it can take 4-6 weeks for processing and approval… and then we would have to advertise, interview, etc.
We kept a log since Friday of everything we do for mom – the personal care stuff. I spend approx SEVEN HOURS in every 24 attending to mom’s needs – getting to the toilet, giving her meds, feeding her, taking care of other personal things, getting her up, putting her to bed, getting her dressed and moving her around. Seven…
And that does NOT include the chatting or communication part of the day! Just the hands-on things that I have to do because she can’t.
So… the other option, until we can get into this program (god, I hope so…) is to hire from an agency at $30/hour. We need someone here 25 – 35 hours per week (the amount of time I’m away from the house)… that’s $750 – 1050 PER WEEK!!!!!!
I’m dealing with things as I go as I don’t want to crash… but cripes.
There is absolutely no way Mom can be left unattended in the house for any length of time. I’m going to be getting a baby monitor – as when I am outside mowing the lawn or in the garage, or in the basement, she needs to be able to call me… sigh… I hardly have 10 minutes to myself at a stretch anymore when we are here alone (my aunt went to my uncles for the weekend so it was just Mom and me.)
As for nights… so far a good night is me getting up twice to help her to the commode. The bad nights – six or seven times. The nurse told me to wake Mom up to go when I get up – put her on MY schedule. So for the last couple of nights I’ve done that – wake her up when I go to bed to go, then when I get up to go myself I go make her go too!!
She’s in pain a lot so on top of her pain med (pill) and the patch (for pain) she can have Tylenol. It helps quite a bit. We’ve discovered it works well to give her one at bedtime as then she will sleep for a good 4 hour stretch which gives me a chance to actually SLEEP.
She lost all her weight in the hospital… she is just a bag of bones… you can see every bone in complete detail. And she complains constantly about her butt hurting… there is NO padding AT ALL on her butt.
I’ve been trying to feed her up but she cut her gums clenching her teeth at night (while still at the hospital) and she can’t chew without pain… it is taking a long time to heal (probably due to the blood thinner)… so I have been doing a lot of chopping and mushy cooking. She’s gradually starting to chew softer things so I hope I can do a roast on the weekend! I’m tired of noodles, rice and sloppy stuff!
I’m glad I don’t have to go to the hospital everyday anymore.