PDA

View Full Version : I need a reality check (this is so long)


Danestress
06-11-2008, 09:25 AM
I'm really having a hard time getting the right balance here.

We will finish of the school year Friday. Except the last few weeks have been almost totally non-school because of my father's accident. He has Alzheimer's (mild still) and fell in the home he shares with my Mom. He had surgery on the ankle. Because he can't remember not to step on the bad ankle, he's needed a lot of extra care, and is currently in a rehab facility. He's doing pretty well. His attitude is okay. He's been snide and condescending with me at times, but also reasonable at time, and seems cognitively pretty good, except that he insists he can get up and do things for himself, even though he inevitably puts weight on this ankle, which actually is still just splinted and wrapped (he get the hard cast tomorrow).

The facility is 35 minutes from my home. I've been going every day and staying for at least a couple of hours - usually more. Typically my mother goes for a few hours in the morning, and then I go for a few hours in the afternoon. She had been hiring a night nurse because when he wakes up and needs to use the bathroom, he tends to try to stand up. But I think he's okay now without a nurse. I can't tell you what it does to my stress level to see him put weight on that foot. The staff at the facility is just barely adequate. They can put an alarm on him that will ring if he tries to stand up, but the forget to put it on all the time. And if he rings for help to go to the bathroom, it often takes 15 minutes for a response. That makes me crazy, though I understand they have a lot to do. I also don't think the nurse's aides have any training in helping move him. Even when they come in and help him use a walker to get to the toilet, he puts pressure on that foot (he's just mentally not alert enough not to) and they seem to let him.

Anyway, I feel like I am going to die of stress. I'm barely holding my family together. My MIL is great to watch the kids for me, and I have hired sitters. my younger sister came down over the weekend, and I took a day off. My older sister came yesterday, and I didn't go yesterday either. But other than that, I feel like everyone expects me to go everyday.

In my family, if I were to say "I can't take this" they would all rally and say to stay home, it's okay, etc. I have a good family - two sisters who live out of town but want to help. But if I don't go, it adds to my mother's feeling of burden - that she will just stay all day because she won't want him alone those hours. I am taking a son to an out of town swim meet Friday night and will be gone over the weekend, so we will have a short visit before I go on Friday and then a short visit on Sunday, but other than that, my Mom is going to be alone with him over the weekend, and the weekends are the worst because the staff is sort of the "team B" at the center. I'm worried about her.

So anyway, I feel like I really need to help my mother before and after that trip. Then DH and I have had a trip planned to Chicago next week for just three nights. I'm ready to cancel it, but DH will be upset. He really wants me to go. I feel sooooo much pressure right now - I can't be in two modes "out of town" and "on duty with Dad." It's just overwhelming me. I feel like everyone needs me and I want to cry. I don't even care about going to Chicago. I'm afraid the plane will crash (I fly all the time, so I know that's just stress). But I feel I owe it to DH, who has been pretty patient about the lousy meals, messy house, and non-existant wife who has nothing to give him at the end of the day. DH loves me and is really supportive, so I'm not reporting major marriage problems - just saying why I sort of feel like I have to go.

Anyway, I don't know what I'm supposed to do. Am I supposed to put in these hours to help my mother? Am I supposed to remind everyone that I am a homeschooling Mom and don't necessarily have the time they think I do? It's especially hard on the days my father is snide with me. He does thing thing where he rolls his eyes and acts like I am just an unreasonable, bossy, controlling woman - because I tell him not to stand up and to call an aide if he needs to use the bathroom. It's stirring up negative feelings I suppressed from my childhood - which was an okay childhood, really, but you know how there's always a little anger there? It's right at the surface now!

I know it's not permanent. In two months, his foot will be mostly healed - assuming he doesn't injure it worse by standing on it, and assuming he doesn't fall and break the OTHER foot. So do I just suck it up and deal with this, put the hours in and straighten my life out later? Or do I set some rules to protect my family life? Is that selfish?

Okay, I just spent 30 minutes writing this, and now I am thinking "so you want to avoid going to visit your Dad because your life is falling apart. Maybe you could have used that half hour for something like laundry!"

Danestress
06-11-2008, 09:29 AM
That yes, it would be easier in some ways to have him at home. We are considering the options. My Mom is afraid to do it because she thinks that at home, he will have many more "reasons" to try to get up, and he can be pretty aggressive with her at times. He couldn't get the physical therapy at home, but the food would be better, and it might help him mentally. It would certainly be easier for me, though I feel it's my mother's choice.

Mom2legomaniacs
06-11-2008, 09:33 AM
:grouphug::grouphug::grouphug::grouphug:

I think you need lots of those! If you are able to get away, then I would get away with your DH. It really sounds like you need a break. You are doing so much. If you don't stop and take care of yourself, then you won't be any good for others. Please take care of yourself. You need and deserve that!:grouphug::grouphug::grouphug::grouphug:

jmgconner
06-11-2008, 09:35 AM
:grouphug::grouphug::grouphug::grouphug:

I think you need lots of those! If you are able to get away, then I would get away with your DH. It really sounds like you need a break. You are doing so much. If you don't stop and take care of yourself, then you won't be any good for others. Please take care of yourself. You need and deserve that!:grouphug::grouphug:

:iagree::grouphug:

OnTheBrink
06-11-2008, 09:40 AM
You can't do it all, and you shouldn't have to. I think you need to tell your family that this is taking a huge toll on you and you need some of the other siblings to step in as much as they are able. You are no good to your own kids and dh if you're completely wiped out from this. And, go to Chicago! You need a break and some time with your dh to recharge. Don't neglect your needs (or his). Hang in there. :grouphug:

Cadam
06-11-2008, 09:49 AM
You absolutely need to get away. Do your very best to focus on relaxing and enjoying yourself. I know that seems impossible, but give it a shot.

The main problem I see here is the nursing home. If one of you have to be with him all day and your mom has to hire a night nurse what the &*^%$ is he in a nursing home for?! You could use the money to bring him home and hire a nurse for in-home care part or full time. Just tell the agency the situation and they should be able to match him with a few nurses that have the right "temperament" for his cantankerous moments. If the nursing home were better then you wouldn't have this pressure.

If your sisters want to help but can't be there are they able to help financially pay for in-home care?

If you have a church or other religious organization ask if there is a physical therapist in the congregation or if anyone knows one. Maybe they would be willing to give your dad the therapy he needs pro-deo or you could hire them to come in, whatever can be worked out. I even found out that one of the mom in my homeschool group is an OT and I picked her brain about stuff for my kiddo. You may find a hs mom in your area who is a PT and could help you out.

readwithem
06-11-2008, 09:55 AM
I'm so sorry. My cousin experienced the same thing with her mom who has Alzheimers. It's a cruel disease. I would have a chat with your dh and get some agreement, either to postpone the trip or to have permission to cry, etc. during this very stressful time. And even though you've had lots of these, I don't think you can have too many :grouphug:

Danestress
06-11-2008, 10:11 AM
The main problem I see here is the nursing home. If one of you have to be with him all day and your mom has to hire a night nurse what the &*^%$ is he in a nursing home for?!

I know. The home has been a source of a lot of frustration! I really don't think he needs someone with him all the time. He actually is pretty content a lot of the time and will just hang out and watch tv or nap. He just HAS TO have that alarm on so they know if he tries to stand up. If they would remember to alarm him and would train the aides to help him move about, I woud have no major complaints. My Dad is handsome and my Mom keeps him well groomed, and he's pretty articulate considering, so I think sometimes the aides don't realize that he really isn't congintive functioning at full power.

I'd love to just bring him home. The problems are that (1) My Mom isn't ready. She's scared he will try much more to get up and will make it very hard on her and (2) he will get NO physical therapy at home. It would be too hard to transport him and they won't do it at the house.

The money really isn't an issue. My parents can afford to do what they want.

JennW in SoCal
06-11-2008, 10:30 AM
I can honestly say "been there done that" as my mom broke a hip, had dementia and kept wanting to get up and walk. She fell and broke the other hip while getting up to go to the bathroom one night. Her dementia also made her very difficult to deal with. There was no one else in town to help me -- my brothers are on the East coast, my dad passed away years ago. She passed away, 10 months after her first fall.

So, yeah I know the stress of needing to be there, wanting to throttle my mother because of how mean and unreasonable she was, the woefully inadequate care in nursing homes, dealing with all of it while needing to be a mom and a wife, feeling like I was failing in my children's education, and needing to take care of my own self.

During a crisis, my mom was the priority. Once she was stable, I made my family the priority and I tried to keep the guilt at bay. We travelled and had a great time. We didn't get lots of homeschooling done, but spent some wonderful time reading aloud together, something we don't do as much under normal circumstances. All in all, my kids weren't behind after a year of dealing with it all. I don't know how, but they stayed right on track!

Since your dad has alzheimers, it is likely he should be in a different kind of nursing home/rehab center with a higher staff to patient ratio. There are alzheimers organizations that should be able to offer services or at least referrals to help your mom out. The nursing home also should have a social worker on staff that you should be able to put to work helping ease your burden. Do you have any support from your church? I think the idea of hiring an outside nurse is smart -- expensive, but the cost of not having a break can be far worse.

Those bed alarms!! My mom, with her dementia and refusing to understand her medical condition, used to dismantle the bed alarm and hide it! I would find it stuffed in drawers in her room!

Take care of yourself. Of course you want to share your mom's burden and help your dad, but sometimes you have to be hard nosed about your own needs and boundaries. Enlist your sisters, find some moral support for your mom, go to the swim meet and to Chicago and forget 3 weeks of homeschooling! Allow yourself to have some fun! On the worst days, I would curl up on the couch in the evening with a soft and cozy blankie, a glass of wine, and watch old movies with the kids. The blankie made all the difference in the world!!

:grouphug:

Remudamom
06-11-2008, 10:47 AM
For pity's sake, ditch what's left of school. Tell your sisters to come and stay at your house when you're on your trip. Insist that your mom hire extra help since she can afford it. Tell her it's for your sanity, and maybe she'll do it that way.

My mom hired a woman to help her when her dh was in a home, and she had to work. Made her life do-able.

Cadam
06-11-2008, 11:44 AM
The money really isn't an issue. My parents can afford to do what they want.

Then they can afford the no-nonsense nurse and in home PT. PT can be done at home you just have to find someone willing to do ti and it may not be covered by insurance. Maybe if you could track down these services and present them to your mom she could get it set up and life would be easier for both of you.

I am so sorry, I know it is way more complicated when you are in the middle of it, than it is for me sitting at my computer spouting advice.

When my grandmother broke her hip and had dementia it was one of the hardest things my family ever went through. It took a huge toll on all of us even though we did try to rotate who was with her. She threatened to call the police on my cousin who was caring for her at the time and eventually they had to fly my sister out because she was the only one grandma would deal with. It is so, so, so hard but please take care of yourself. You don't need to fall apart too, that will not help anyone.

Kelli in TN
06-11-2008, 11:55 AM
I think you should go on the trip. I would let the schoolwork go for now, but not the trip with your husband. :grouphug:

Dana in OR
06-11-2008, 12:36 PM
He had a major stroke and paralysis on his left side. There is a *huge* emotional toll visiting at the nursing home and trying to make sure that care is being given. It is frustrating for the family, and even more frustrating for the patient.

In our case, things got a lot better when we brought him home. We hired nurses to care for him during the hours that we worked (this was pre-children days). We also paid them extra to do some housekeeping. After that we were on duty.

It sounds like he may need much more nursing care than we had to have, but even so, it would allow your mom to get out and away. When he's in the nursing home there's always such a guilt (and relief) when you leave. He probably hates it there - who wouldn't? Even the nicest nursing homes are awful compared to being home.

One thing that you have not mentioned; can he use a urinal in bed? I mean the kind that is like a plastic bottle with a handle. That is so much easier than having to get up to urinate and it can be kept available on a night stand or hung on a bed rail. Then the caregiver can dump it in the toilet and give it a good rinse with liquid soap and hot water.

My dad, being paralyzed, did a lot of transfers to his wheelchair during the day, but they were exhausting. There is no way he could have done it every time he needed to urinate.

About PT - I bet there are many exercises that can be done at bedside. Or perhaps he could go to PT appointments?

I would seriously consider bringing him home and before doing that, there are specialists who can assess the home situation and recommend useful home health equipment.

I know that with dementia there is an added challenge to all this, maybe it is the hardest thing of all. He'll probably need to be in a facility at some point, one that specializes in alzheimer's.

My heart goes out to you. Right now I'd just stop doing school and call it the end of the year -- today. You can always add in learning activities this summer. Is GraceinMD online? She'll probably have some good info for you. I will pray for you and your family.

Danestress
06-12-2008, 10:00 AM
Dana, thank you for your input.

He was using a urinal in bed after the surgery. However, my father is not an advanced Alzheimer's patient, and he will definitely be coming home at some point, as his ankle heals and he learns how to navigate without reinjuring it. So we are working towards independence. He does NOT want to use the hand-held urinal now, and will definetly jump up to try to use the toilet on his own if that's his option.

Yesterday I had the physical therapist show my older sister and I how to help him get into the wheel chair and then use the toilet. He needs assistance and directions, but he is getting there. I actually feel a lot better already, just increasing confidence in my ability to help him with a reduced risk of injury. Also, I am trying to remember that, as my sister says, if you try to reduce the risk of reinjury to zero, you basically have to tie them down, and my Dad is still a reasonably functioning man who had had a very hard time giving up driving, but is otherwise able to do most things for himself. I want him to be able to succeed. Even though I also want to kill him at times:)

Thank you so much for your shared wisdom. It's really hard figuring out what to do. I do think my Dad needs to stay in rehab another couple of weeks, and my mother is pretty adament about that. She's go to get bars installed in the shower and toilet and get a few other alterations going for the house, and he needs some more occupational therapy, but soon. I hope soon.

Danestress
06-12-2008, 10:03 AM
Jenn, that was just a very helpful post and I appreciate you taking the time to share your own journey. I've been feeling like my father invented the idea of breaking a bone when you have Alzheimer's. It seems like all the nurses are at a total loss and have never heard of such a thing, lol.

My Dad was in pretty good spirits yesterday, and I told Dana above that I fee a lot better because I had the PT show me how to help my father use the toilet. That alone reduced my stress for one day. And it's defintely one day at a time here! I hope your siblings appreciated you taking care of your Mom!

Dana