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G'morning everyone,

 

(apologies in advance, this will be long, sorry!)

 

 

Please post responses or PM me. I really could use the support! Thanks.

 

Just this week it looks like Mom is "moving on" with her life and leaving dad behind. It is upsetting to me.

 

For months, she would go to the Nursing Home and stay for 7 7.5 hours to make sure everything was going OK.. dad was being changed, turned, fed properly, remained elevated for the required length of time after eating, there was NO abuse... Everything. My husband, I, neighbors, and other residents at the Nursing Home tried our best to encourage mom to take a day off, or at least not stay as long, but she would NOT hear of it. I was worried that she was running herself into the ground and that she would not be any help to dad.

 

Last week she developed "flu like" symptoms. Certainly I was concerned for her, and told her to GET OFF THE MAT ON THE FLOOR that she's been sleeping on. Yes, for 10.5 months, my mother has refused to sleep in the bed without my dad there. So she began sleeping on a 4" mat on the floor. I begged and begged her to get off the floor but she would not listen to me OR my husband. She insisted she was going to sleep there. Which she did, herniated disc, and all. Now she is hobbling up and down the steps and can barely walk herself. I will likely have to get some sort of device installed in the house as she cannot make the 16steps to the second floor of the house without stopping for a "break" after 3 or 4 steps. . .

 

Ok, ANYWAY - back to my dad. . .

 

Since she took that day off, and I DID managed to get her off the floor and into a BED (she is 71.5 years old!), she has begun to RAPIDLY show little interest in going to the Nursing Home to see dad.

 

On Thanksgiving Day, dad was permitted to come home for a few hours and eat REAL food! He is now going to be put on a diet of "regular" food instead of pureed food.

 

Looking back, it seems she didn't want to be too bothered with him coming home. She asked me if I would ride in the ambulance with him because it was raining that day; and she didn't want to take a chance and go out in the rain for fear of catching pneumonia. I understood perfectly well, and was more than happy to ride with dad that day. Before he left that night, she told dad: "if it's NOT raining tomorrow, I'll be in to see you." She didn't kiss him goodbye, which I thought was "odd," at the time, and looking back, even MORE odd.

 

The next day it was a beautiful day, the sun was shining, it was gorgeous. She told me: "I don't FEEL like going to the Nursing Home today." That bothered me when I heard it but I figured she had over done herself staying so long, so I let it go. She went that day anyway, she stayed about 3 hours.

 

Yesterday was another sunny day. Mom went again and came back in 3.5 hours. I was suprised she had come home so soon. When I asked, she "snapped" at me and told me my dad was upset she was leaving so early too. That was pretty much all I needed to hear.. knowing that my dad was unhappy REALLY upset me.

I told her, "maybe you should have stayed shorter hours each day or taken a day off from time to time so it wouldn't feel like you're shorter visits now are so noticeable and 'cold turkey' to dad. She got angry at me for mentioning that. Her retort to me was: "I've been doing this for the past 10.5 months.. and I"m tired - I can't keep doing this everyday." That's all fine and good and I DO empathize with her on that point. However; unfortunately for her, she's overlooking one 'small' detail... "I" too have been doing this and not only that, both my husband and I have left our home in Montana - packed everything up and moved back East to help out. Sure, it's fine that she wants to give things a rest, but it feels like since she has "us" here, she really doesn't HAVE to bother with her husband. THAT saddens me. To know my dad feels alone like this in a lonely Nursing Home is a pain like no other to me.

 

My husband and I go only at night (after he's done working), because I am not able to drive myself due to medical situations. However, when I heard that my dad was so upset that she left early, I was tempted to drive there myself in dad's old car without a license. It REALLY bothered and upset me.

 

I also feel that when dad is TRYING to talk, mom doesn't try hard enough to listen. She keeps telling dad "my ears are ringing you have to talk louder," OR "wait until Cathy gets here and tell her." My dad stops talking and doesn't say anything after that.

 

Usually when I get there at night, we have a good time, lauging and talking. Last night he was pretty quiet. And I had a good idea why. Yes, that bothered me too.

 

 

Is one year about the average length of time that most folks "wait" to see if their loved one will make any sort of improvement; or an improvement to their satisfaction? I'm really getting the feeling that she is "giving up" on dad now. In fact, my husband had the same opinion. He said: "your mom has decided to 'move on' with her life."

 

Is he right? What have others done in this situation? Basically my husband and I put our ENTIRE lives on hold to come back here for what we thought was "to help," but are now feeling like it's "to care for entirely."

 

Opinions, PLEEEZE!

 

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This is a really difficult situation to respond to - although it may seem easy enough at first glance. I know the sacrifice you and your husband have made in order to come and help care for your dad. It is no small detail, as you feel. I applaud you for making the sacrifice.

 

After my dad passed away, based upon a promise I made to him, we moved my mom some 1200 miles to be near me so that I could care for her. It wasn't easy, and although she lived independently during that time I ended up not only caring for her, but Bill suffered 2 strokes during the last years of her life and I was torn many, many times about who needed me most.

 

Both times Bill was admitted to a Skilled Nursing Facility I collapsed from weariness with "flu-like symptoms". I'm convinced it was not the flu, but exhaustion - both physical and mental from the care he requires. I'm not complaining, it's just a fact. I can also tell you I've experienced a certain amount of fear each time he's come home, wondering if I can really care for him 24-7 the way he needs. Yes, it's possible - one day at a time.

 

It does get easier to not spend nearly every waking hour at the hospital or SNF once I've made the break and attempted some sort of "normalcy". The last thing I would need to hear is someone intimating that I am not "bothering" with my husband. I was especially upset the last time Bill had to go in the hospital to be told by his son that I am trying to "hide" something from him - even though he doesn't come to visit for months at a time. Nobody is walking in my shoes - or your mother's shoes - but us.

 

Please don't assume that because your mother is taking some time for herself right now that she is giving up on your dad, or has a desire to move on with her life in a negative way. Bill's desire is for me to be at his side 24-7. That isn't reality, and even though I've been guilty of enabling him way too much, there comes a time when we need some time to ourselves. It doesn't mean we love our husband any less, or that we want to abandon him - it just means we are individuals too. It's exhausting to spend 7 - 7.5 hours a day at a hospital or SNF.

 

So, relax. Your dad is being cared for. It sounds as though your mom needs some break-time. Remember that it was your choice to put your "lives on hold". I doubt your dad has expected you to do that. I have to remind myself that care-taking has many different forms - it doesn't always mean hands-on day to day "physical" care. Sometimes it means overseeing others doing the day to day stuff so I can be a wife instead of a care-giver. Your Mom needs to "move on" with her life. But moving on doesn't necessarily mean she is abandoning your dad. It means she can once again sleep in her bed without feeling she is betraying her husband, it may mean having lunch with friends and then sharing something new with your dad, it may mean having her hair done or shopping.

 

I would encourage you to reassure your dad that those who are employed at the SNF can care for his needs as well as your mom. He isn't going to be happy that she isn't there 7 or 7.5 hours a day. The "lonely nursing home" doesn't have to be that way. By having your mom there 7 - 7.5 hours a day I bet he hasn't participated in the activities that are available to him. Rather, he has depended on her to keep him company.

 

Let him know he isn't abandoned. Encourage him to participate in all his therapies. If he is going to come home permanently he has to be strong enough to do so. Also remember that your mom may have alot of fear about your dad coming home. She has that safety net of the SNF right now, and she probably realizes that if and when he comes home she won't have the security of nurses any longer. It's all very complicated and there just is no easy answer.

 

The key is really to talk to your mom about her feelings and yours. Communication is the only way you are going to know what's in her heart and mind. Maybe I've given you some things to think about as you consider talking with her. This isn't a situation that will someday be all better. Stroke is a life changing event. I'm sure you know that now, and I hope that for now at least you and your husband are making a life for yourself back east - and aren't just pining for the life you had in Montana. In time that's just going to lead to resentments. I'm not saying any of this to be mean, or judgemental or hurtful. I'm only saying these things because I've experienced your emotions and your mom's as well. I've cared for my mother in her elder years post-strokes and have and am caring for my husband post-stroke.

 

Warmly,

 

 

 

 

 

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I agree with Ann on every point she is making. Your mom is 75 1/2 years old and spending nearly 10 1/2 months doing what she's been doing has worn her right out. She's probably near a mental and physical breakdown and that shouldn't be translated into her 'moving on' and away from loving your dad any less. On some level I'll bet your dad already knows and understand this, too. You can't spend decades with someone and not understand how they handle life issues like stress, devotion, comittment, fear, etc.

 

You have every right to be upset with this situation---it's a difficult life issue that lots of us have gone through, having to care for two elderly parents at the same time. But try to focus your feelings and frustrations on the situtation and not on blaming your mom for its development. She has just reached her very human physical and mental limitations and can't keep up the super-woman wife pace that she's been for the past 10 1/2 months. At this point in time, it no longer matters how you all got to this place, so put your energy in doing some of the things Ann suggests up above. If you could arrange for family counseling that could help you all come to terms with the difficult changes on the horizon.

 

Good luck and you'll all be in our thoughts.

 

Jean

 

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I have to agree completely with what Annie has said. I, too, have been in the position of being judged for not spending enough time at the hospital when my husband was in ICU. I was operating on exhaustion levels and even got lost trying to drive home one day. I feared that I would pass out behind the wheel of my car and injure someone if I didn't get some much needed rest. As a result of taking some time for myself so that I could be there in the long run for my husband, I was judged to the point that a social worker was called in to question my intentions. Totally ridiculous!!!!! And those same family members who judged me, are the ones who don't come around very often to see my husband now that he is 2.5 yrs. post-stroke.

 

Please remember that your Mother is much older than you and the stress of all this is probably taking a worse tole on her than you could ever imagine, physically, mentally, and emotionally. Give her some space and have faith that in the long run she will be much more able to take care of your Father if she is able to take care of herself.

 

 

Sarah

 

 

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I'm sorry everyone is having a difficult time. It's never easy on the stroke survivor or their family. Everyone handles emotions so differently. I also agree with the above responses. When Rachel was in the hospital post-stroke for 56 days, I was exhausted. I stayed at the hospital and my husband would come and stay for hours and then go home. At first I wanted him there all the time with me, but someone had to take care of the house, the bills, groceries, and our other daughter, who was having a difficult time dealing with her sisters stroke.

 

I will say though that when I needed a break, everyone understood. Even a few hours revived me enough to face the challenges again.

 

Your mother needs some space. Starring at the same 4 walls all day is hard. I'm sure she is having a difficult time also. This is her partner in life and something beyond everyones control has happened. It changes your lives immediately. You're never prepared for this.

 

Hang in there.

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June,

 

Thanks for understanding my situation and offering your best wishes. It really helped to calm me down a lot just reading them; I didn't feel totally alone.

 

Annie,

 

Well you have done it again lady! You have given me some excellent points to ponder! Your advice and suggestions are invaluable to all of us here, I hope you NEVER stop posting!!

 

I appreciate your sharing both sides of the situation that you were on. That really helped. Some of it was not easy to "hear," but I know I needed to hear it, so "I was open for suggstions."

 

I did make my post relatively short (if any could imagine that!), and left out quite a bit about dad. One thing I didn't mention is that dad is basically 100% bedridden. It is not likely that he can do these activities in the SNF, but just the same, I understand what you were telling me. Thanks.

 

As for pinning our life in Montana: I personally haven't really felt homesick "all" of the time that I've been out here, but I know my husband loves, misses and dreams about that state. He never stops talking about it, or the folks out there. He calls at least 2x each month. My personal opinion is I absolutely HATE New Jersey which is where we are. But I am making the best of living out here. I so hate it though. Oh well, some things take priority I suppose.

 

Jean,

 

Thanks for YOUR thoughts as well. I especially needed to hear what you said about my mom being "probably near a mental and physical breakdown." That idea had never crossed my mind, thanks for putting it out there in front of me! I will do my best to keep dad happy and let mom have the time she needs for herself. I will also remember that: mom has likely: "reached her very human physical and mental limitations and can't keep up the superwoman wife pace that she's been for the past 10 1/2 months." Those two thoughts were very much appreciated, thanks!

 

Sarah: Thanks for your thoughts, too. You hit the nail on the head when you told of your experience, (paraphrased): "I was operating on exhaustion levels." I have wondered for months how mom has been able to do all this, physically, and handle and process these things, mentally. All three of you

have just given me the answer. I really appreciate hearing it, thanks!

 

EDIT: Now, if any of you might be able to direct me to where I might go to find out about having a "wheelchair lift" installed in our home, that would be just absolutely wonderful. It really does something to me to see my mom hobbling around the house and up the stairs when I have no clue HOW to help her. My husband said that if we went with the "elevator lift," I likely would have to get a building permit to have that installed because I will be changing the existing building. Mom does not want the stair lift for herself because she figures dad will not be able to use it.

 

Any ideas?

 

lisas,

 

Sorry, did not see your post until I already posted my reply.

 

Hey, thanks for your response!

 

I will definately give mom some much needed space! You make a good point about staring at those same 4 walls each day.

 

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Sounds like everyone is exhausted! Poor Mom is spending many hours every day with Dad. Dad is struggling to recover. You and your husband have uprooted your lives to be there for them. (Hubby, by the way, must be a pretty good guy to make that kind of sacrifice for the in-laws!)

Your Mom isn't moving on, she's trying to cope. It's hard to view her as anything but Superwoman, she is your Mom! But she is over seventy and probably terrified. Your father doesn't need her physical presence 8 hours a day at the hospital, he needs to know that she will be there when he does need her. Fear of abandonment is natural. But Mom isn't running off to Figi with the pool-boy :rolleyes: .

Your parents are probably like most long married couples. Mom assumes her love is a "given". She doesn't think she has to tell him. Maybe you should tell your Dad how scared SHE is. Let him be the strong one emotionally, if just for a bit. It's nice to feel needed.

Good luck, I hope your Dad continues to improve.

p.s. Take a little time off yourself. You sound like you need it.

Carol

 

Oops,

I forgot the point I started with :blush:

If you search "elevator lift" online there are several places that specialize. Medicare or your parents insurance may even help if your parents' doctors sign off on the need.

Carol

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Carol,

 

Thanks for your reply, as well as thanks to all others who have replied. I guess I needed to vent, and you guys were here for me. Ten million eleventy billion thanks - sounds like a lot but it doesn't quite seem like enough...

 

You guys have all managed to refocus my line of thinking, which is a GOOD thing. I am now very understanding of the situation and mom.

 

It is all good, and again, you guys are WONDERFUL.. every one of you!

 

Love,

Cathy

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I just want to WELCOME you to the site. I knew the 'caregivers" here would come through for you.. They are warm, loving and full of experience..

 

Welcome to the site, you will not feel so alone or lost now you have found your way here.

 

Warm wishes to your whole family

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Not sure I can give you much help but from my experiences as a having had a stroke.

 

I was scared. The Doctors told me that the first 72hours were critical. Not sure that they meant to tell me they were discussing it with my family and I overheard. Couldn't really move, my voice was whisper but I heard them....

 

The first 72 hours I was never left alone. My family and my boyfriend took round the clock shifts so that I had someone there.

 

After the "danger" period had passed my boyfriend and my family went back to work making sure that they came during regular visiting hours. This allowed me my much needed rest and saved them from being kicked out of the room repeatedly and allowed them to have a more normal existence during the day.

 

In rehab they came in shifts. I was scheduled for most of the day with PT, OT, and Speech therapy. My aunt and grandparents would stop by during my break times to make sure that I had something I could eat etc. I was on a thick liquid/mechanically softened food diet. YUCK!!!!!! I ended up eating smoothies from Dunkin Donuts most days. (I am on a real diet now)

 

All of the time I knew that it was hard for them. I was in the hospital and it was scary to them and to me. We didn't know how I would end up and they wanted to help me but still needed to work and keep their lives going. When I had things to occupy my time such as being in rehab it was easier for me to be alone because I wasn't really alone and was too busy trying to get my life back to care. I did have my moments when I just needed someone to be around. It is very tiring and scary to be alone for such a long time and that is what you feel.

 

Things that could make them both feel better:

- have your father participate in scheduled activities

- have them create a schedule of when visits will occur. It felt good knowing when someone was going to be there

- have your mom participate in activities she enjoys (she should continue them even when your dad comes home)

- see if there is a counselor in the facility he is at. It could help them to go individually and together. They both have so much to deal with and accept.

 

I hope some of this helped. I'm only 32 and had a stroke which has changed my life I can't imagine that it is any easier when you are older and have been living your life one way for so long and it is changed. Everyone feels indestructible until something happens.

 

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