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Busy Family Week



Yesterday my daughter and granddaughter left after an eventful week. I find that when I sit around too much I feel a lot of pain and I begin to feel it bogging down my emotions as well. On the flip side, if I do too much activity I’m left in severe pain but I feel great because I had a good time getting there! I often choose the later plan. And since it is rare for me to have all of my girls home at one time, I pushed myself to the max and let the Vicodin get me through the nights.


My youngest and I discovered a pricey but extremely yummy Indian restaurant some months back which we wanted to return to with the whole gang. I guess it was because we were spending a big portion of our budget on this one meal, the girls decided to make it as special as possible. Before hand, there was a wild exchange of jeans, tops and high heels as well as hours in front of the mirror applying makeup. Even Mom here was decked out in an off the shoulder top and black spiked heels. The staff in the nearly empty restaurant was board and surly when we arrived but I guess our high spirits were contagious because several of them entered into the fun of it and made our evening most enjoyable.


Next big event was a day at the beach. Due to work schedules there were only five us on that trip so we were able to all fit into one car. There is one advantage to being over-weight; I float better than a boogie board! But that means the skinnier members of our party depend on me to keep their heads above water when the said boogie boards are being used by others. This was especially true with my granddaughter who was not strong enough to do some of the antics her aunts were doing unless starting from a position on top of Grandma. Therefore I was pretty worn out before we hit the boardwalk. I used to wonder how people could go to the beach and just sit while others were enjoying rides. I am beginning to understand! While I was happily dragged onto some of the tamer rides I chose to sit out the more rigorous ones, taking pictures from the sidelines.


Sitting on the sidelines gave me time to think though. I reminisced about when Dick and I had been able to go to the beach together and found myself missing him deeply even in the midst of all our fun. While Dick and I were living in our motor home full-time we often would spontaneously drive down for a couple of days at the beach. If the kids were with us we would do all the usual crazy things but when it was just the two of us we would spend hours more quietly taking in the sounds and smell of the surf or chatting with the fishermen along the inlet. The last few times that I took Dick to the beach it was HARD work (especially pushing him over the sand.) He has less and less patience with sitting while I enjoy the water and begins to fret because he is always concerned for my safety. So as much as I missed him, I have given up taking him.


So it was that I neglected Dick much of the week choosing to spend the time enjoying doing things with the girls that I would not be able to do if I had him with me. It has made me sad to be forced to make those choices but at the same time I have felt a sense of freedom I have not felt since Dick’s initial stroke 6 ½ years ago. When he first moved into the nursing home I thought I would be able to get out and make friends. Most of the time, though, I still feel I need to be with him; I am still isolated even after a year of him being there. Somehow I need to stop feeling that I must give up life because he is no longer able to be an active part of it. Easier said than done. My mind can agree with the logic of this but my heart is still bound.


The one big event that I did include Dick in this week was a family “picnic” on the Fourth of July. We threw burgers, steak and salmon on the grill and filled our bellies with fresh veggies, salad and dessert. With high temps outside our “picnic” took place inside were it was a bit safer for the older members of the family not to mention easier on my back not having to get Dick and my mom up and down steps. Work schedules intruded into our day but there was a short period of time when everyone was together. And believe it or not we all managed to end up in even in the same room where we introduced my parents to Rock Band! It was rare moment that I do not expect we will be able to repeat very often but priceless.


I was tempted to keep Dick over-night but I was mighty worn out from all the activity. My oldest assisted me in getting Dick back to the nursing home. It was so nice to have even that little bit of assistance since I generally handle Dick all by myself. I am sure that Erin has no idea how special that was. I was pleased to note that while Dick was disappointed when I told him it was time to leave, he seemed a bit relieved to be back in his room away from the confusion of the girls. I returned home to join the girls as we played with sparklers in the street handing them out to the few neighbors that actually were out there with us.


The bad news is that all my shenanigans have caught up with me and I will most likely spend yet another day in my bed or recliner. I am relieved that my daughter and granddaughter have left because I don’t feel I need to be entertaining them but I miss them all ready. I miss Dick even more. I have not been able to see him for a couple of days because I am unable to drive. This is the first week I have not spent several hours a day sitting with him except when I was in the hospital or when I went to visit my daughter for a couple of days. I feel tugged in so many directions. I miss him. I feel badly that I am neglecting him. I feel frustrated that I have limitations. I feel angry that I cannot simply take time to deal with feeling bad and not feel guilty about it. I HATE feeling guilty but I have yet learned how to stop.


I still maintain that this point of pain and frustration was worth it all because I did have some wonderful times with my family. Somehow I will muddle through and start the cycle all over again. My physical therapy has been discontinued because of a change in my insurance. But I do have a new set of exercises to continue so maybe recovery will not be too long.


I close with a side note updating my ongoing struggle with the nursing home. I am into week two of telephone tag with the state ombudsman. I have been more aggressive about making them give Dick showers when I am available. I have also demanded them change his pull-ups when I am there so I know that they are getting done at least once. It is amazing to me that they do not try harder to put him on the toilet because when they try they are often lucky meaning he will stay dry longer. I presented the list of missing clothing to them and so far have heard nothing back. But I have seen at least three shirts show up in Dick’s closet that were not his though they now have his name in them. Since they are obviously not new, I wonder what other fellow is now missing shirts. The irony is that these are all short-sleeved shirts which will not do as replacement to the warmer ones that went missing over the winter months. Sigh…


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Ruth, thank you so much for continuing your blog. I think we will all need to face what you are finding, hopefully the fun as well as the guilt, when we have to place a loved one in care.


I am hopeful still that Ray will come home again but if he doesn't I will take some time to think over some of the things you have brought up in your blog.


Thanks so much.



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Ruth: wonderful week. I can't believe all the great things you were all able to do. But mostly I am proud that you did it. We all know in stroke recovery, as long as our person is stable, one week probably won't make a difference. There are issues with the nursing home that you must deal with, and I know that. Skin breakdown can be quick, but mostly as you were checking in and have made the care as routine as it may get, happy that you were able to enjoy time with your family.


When my sister comes I still pay a caregiver for one night so we can go out. Now, big difference-Bruce is in his own home and caregiver is of my choosing. But I do so enjoy those nights off.


Like Sue, I appreciate your honesty and willingness to share your feelings. After 2+ years in, I often ask myself "when does the guilt go away." I appreciate knowing that it probably never does, but there are ways of coping with it.


Good for you with your follow up with the Omsbudsman and the nursing home staff. I can only hope and pray that things will go smoother. Its funny you mention the toileting. My caregivers here and at work much prefer taking the patient to the toilet. And for the exact reasons you mention. It is in Dick's best interests to toilet him, rather than let him sit in wet. And I certainly know that that is not often the thinking of the caregivers. But my team says, last thing I need today is yet another linen-clothing change. Thank you for that insight.


Rest up. Take care of yourself. Back to the daily routine. Debbie

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