Botox, Incontinence, Update

[ARutzen]

Good morning all,

I've been reading some of the posts that come up, but haven't had time to sit down and reply at all. I hope everyone is doing ok.

Mom is about to go into her 2nd month of living at the Phoenix. At first I was worried that things wouldn't get better and that they weren't going to be able to help her with CBD. But - we have her on hospice so she has extra help (even though sometimes they slack too..) her meds are all correct now and she has PT/OT (one of those) 1x a day. Last Friday she went to the neurologist again for her Botox shots. They put some in her left forearm and some in her left bicep. They said 7-10 days to see if anything works, so I'm still clinging to hope that by this weekend she will be able to have some mobility. I really want this to work for her! My brother is coming from Canada to see her for the 1st time since December. He has expressed worry and I think it's finally sunk in that Mom isn't going to get any better.

A few things though that do concern me... she got a bad UTI this past weekend, but luckily she was staying with me for a few nights and I could call for her antibiotics and so she's working through that, but one night she woke up to an accident and said she didn't feel it happening or feel the urge to go. I know she has a UTI, but I asked her today if that was happening more often (wetting the bed) since she's been at the Phoenix. She said she thinks so. I know there are options for incontinence, but I'm curious if that is something that is normal? I realize she can't feel much on her left side, but I know now that it's going to the right side too. Both of her feet have terrible circulation, she cannot walk far at all anymore, and then her bladder - I think - is having overall issues with holding any liquid.

Part of me still feels a lot of guilt knowing that she's not with me all the time, but she has reassured me that things are better at the Phoenix. The staff has been better, the night nurses have been kinder, etc. but now that I don't see her every day, when I do see her each week, I notice that things may have gotten worse but sometimes I can't tell. The main thing I noticed was that her exhaustion is intense. Getting up out of the wheelchair and walking 10' exhausts her. She used to be able to go to the end of our street, then it was too much and she could only get to the end of the driveway, and now today - she can't go any further than from her bed to her bathroom. l want to stay positive and know that she's got the help she needs from the Phoenix, but I also feel like she's getting closer to becoming bed bound and this was all within 6 weeks. Every month I notice a decline... She's not drinking as much and I told her she has to keep hydrated. She can still eat, but is having trouble holding things with her right hand now (another sign that it's progressing) but she does have dry mouth a LOT. I think she's doing that because she doesn't want to have an accident, but I know she needs to have water.

Anyway... I know my brother is going to have a really hard time seeing her like this, but I'm really glad he is able to come. I keep trying to convince myself that this is all normal. My brain does wonders when I allow it to cover how sad I am. But then, there's always something that happens where reality hits hard and I get scared all over again because I realize how unreal this disease is.

Anyway, I hope everyone is doing alright and hopefully I can respond to some that I wanted to. Love and hugs to all!

-A

[Wylyone]

Hi , my wife has had PEP going on 9years. Although they say this disease is progressive she been very fortunate to have system's come a little slower. After all that time her issues are still developing , the falls started first, the eyes, soft speech , incontinence and build up of saliva. The incontinence started slowly with leaking ,so we went to a urologist he suggested a Inter stem for the leaking . This is a easy surgery where they place something on the nerve for the bladder . They actually have batteries attached to this inter stem which stimulates the nerve from a program where that has two parts. One is the size of a cell phone you place by the batteries that are under the skin near the buttocks. Next you have a cell phone which has 7different programs. You send a signal to the inter stem to stimulates the nerve to stop the leaking. With all that said it dose work but now she is experiencing total loss of the bladder which were addressing this week with the urologist.Sorry about rambling on , just wanted give you a picture of what it is about.When something new starts we address it with the neurologist to find out what we can do. Everything this disease dose is terrible for the patient also for the caregiver as I'm sure you know . Their are so many things that it attacks her I I could go on about everything that she has had taken away from her but I won't .

Having great Faith in the Lord Jesus we would not been abel to get through this ,I know there is more thing's that are going to happen to her but with out Faith in Him I would go completely crazy . Trying to keep positive and even tempered is very frustrating because of being helpless , us men feel like we can fix everything , it's hard when we can't. We'll all get through this with faith in Him .

God Bless!🙏

[ARutzen in reply to Wylyone]

I will have to ask about that with mom's neuro. She just changed and (in my opinion) wasn't my favorite... but good to know and I will ask - thank you. Keeping my faith has been a challenge over the last year or so, but I still hold tight because I know He's in control, not me. God bless you and your wife!!

[AJK2001]

It sounds like your Mum has settled in well, which must be a relief to you.Can you ask the home to monitor your Mum's fluid intake to make sure she is drinking enough. Incontinence does tend to come with PSP but just old age as well, do talk to her doctor, they maybe able to suggest something - sometimes changing the time a medication is taken can help. My MIL who is a very healthy 84 year old, will not drink enough precisely because of what you say, as she sometimes wakes up to find she's wet - everything else functions fine!

So glad your brother is coming to see her, when he gets a better understanding of her situation he should hopefully be more supportive of you.

[ARutzen]

Hi there! Yes I think I'm going to alert the staff today. She said they gave her a different antibiotic to try to combat the UTI so I'm hopeful that clears it up. I hope you're doing ok!!

[Indiana-Girl]

Good morning! My husband has recently begun having serious incontinence issues. At first, there were just a few issues once in a great while. Now it seems as though he doesn’t even really know when he has to go. Sometimes he thinks he has to go and doesn’t and other times he has to go and doesn’t know it. His neurologist says he has a neuro gen bladder. This insidious disease even takes away from it’s victims the ability to control their bodily functions. His urologist wants to put in a permanent cath to prevent UTI as many times he is not fully emptying his bladder. He is now in diapers all the time and even though we take him to the toilet every time he asks, we still have issues. I strongly recommend you not get angry or frustrated and just give into the need for diapers or pull ups. It is much better for the loved one and for the caregiver. This is a normal progression of the disease and I fear it only gets worse from here. My beloved of 31 years sometimes does not respond when I talk to him. His speech is difficult and many times unintelligible. Sometimes he has a fixed stare and I wonder where he has gone. His walking is now for the most part gone and he is wheelchair bound. I HATE what this disease has done and continues to do to him. It is so very heartbreaking to lose a little bit of your loved one at a time. Three years ago he was remodeling our home and today he can barely feed himself. It is such a blessing to be able to read and share on this site. Thank you to all who open up and keep others in the know of what to expect and to know we are not alone

[ARutzen in reply to Indiana-Girl]

Good morning - yes we have had her in depends for a while now, maybe at least 4 months, and I'm hoping the UTI meds will clear her up and she won't have the urgency as much, but I'm also wondering if this is just the next thing she'll have to face. She does sit for a while on the toilet to see if she can empty things, but sometimes it doesn't work. Then she'll stand up and it happens. We try to laugh about it as much as we can, but I know it's not fun for her.