daddysgirl-2
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When I brought Dad to my home to care for him while he was receiving treatments, I would bring mom to our house as often as I could. She isn’t able to take care of her house…not the big stuff…so I hired a cleaning service. And specifically one person that came recommended to me by a friend of mine. Mom had such anxiety that I told her I would be there the first time to go over things with the agency. I talked with mom prior to hiring the service and I tried to get mom to express what she wanted to have done, to hopefully empower her so she wasnt’ feeling ‘incapable’.
The first meeting went so-so. The agency is terrific. Many people hire them for their elderly parents as part of their service is to prepare meals, run an errand, and communicate with the children any oddities that may be observed. According to mom, the house wasn’t clean enough, they miss spots and she doesn’t want them cooking. OK. We can work through that. The second meeting I made myself available again, to work out the kinks. Still just soso, according to mom. The third meeting, I stayed with dad-mom didn’t answer the door! I tried to explain to mom that I couldn’t take care of Dad, oversee my disabled brother’s care, babysit my niece, work parttime, take care of my husband and my own home, and be there to clean her house too. I told her I needed this help. I was paying for it. And she could manage it as she saw fit…again, trying to give her the power. We ended the service. I can only imagine how she would react if I suggested someone to come and assist as a caregiver…We are, in fact, dealing with this issue with the needed care of my husband’s elderly parents two states away. My father in law believes (at 85) he will be able to manage my mother in law’s personal cares, the feeding tube and PT, etc. My husband just returned from visiting there, and my sister in law will be arriving there to assist with care decisions. Hopefully, my in laws will be receptive to assisted living arrangements. I try to put myself in my parents/in laws shoes. Must be a frightening time of life to let go of independance…to be in such a vulnerable position. If only we could show them how much life will change for the better with a few tweeks of living changes.
I recently won a prize gift basket at our Chamber of Commerce’s banquet. Among my winnings was a three hour house cleaning gift coupon. Think mom will let me use that on her house???
another gift in that basket was a bottle of wine. You may be sure I enjoyed that myself.Good luck, Stan. You are a very considerate son, and your parents are very fortunate to have you and your brother. You’ve been given some great advise here, and I wish you well. As you can see, you are not alone.
Peace be with you and your family,
JoleneDarla,
I’ve meant to ask you where in Wisconsin do you live? I’ve been hoping to take mom to Holy Hill within these next weeks. So beautiful there. I’ve a good friend whose parents live in Cedar Grove and my husband graduated from high school in Neenah, went on to graduate from UofWMadison after a year at Stephen’s Point. We are planning a return visit for our anniversary at his beloved Door County.
It’s strange having the ability to plan for different things…as with all of you, a year ago today, I considered a quick trip to the grocery store as an exotic retreat. I think of you all especially now, as we face our one year anniversary.
Peace,
JoleneIt was my first father’s day without my dad, too. I decided to visit my sister-in-law a few states away, her son was getting married that weekend. I also chose to drive which gave me much desired/needed time alone. I ‘talked’ to dad, cried, and reminisced-just me, dad and the corn fields along I-35 in Iowa. By the time I reached Missouri, I was exhausted.
I can appreciate that with time the pain will dullen; it’s just so hard to believe when it is so sharp, even now, almost a year later. I feel that I am just beginning to breathe again after holding my breath for 10 months. But I do feel as though my mind is clearer, and I am beginning to feel like my old self, slowly but surely. I keep reminding myself that Dad would want me to live happily, to take care of my family, to carry on.
And then, I have moments when I feel like I am betraying dad because he’s not here, enjoying life as he did while he was alive. He loved life. He made an adventure out of everything. He loved to tell us that he loved us, and call us to hang out. There is a feeling that if I stop hurting, if the pain goes away, then I will have moved on with life, and moved past my dad. I can’t imagine not being with him every day, even if it’s a memory. I can’t imagine not feeling this pain that I have felt since before he died, knowing he was about to die.
I looked at father’s day cards this year. In the past years, I always looked for the cards that dealt with a dad reminding daughter to check the oil of her car. This was a standing joke between my dad and I since I got my first car years ago. I could always find one with some variation of the joke. I stood in front of the cards, searching, and this year could find none. I felt so stupid as I stood there crying in public.
I did put a tribute in the paper for dad to be run on father’s day. I stopped by the cemetary on my way out of town. And spent the day quietly, renewing my relationship with my husband’s sister and her family. A wonderful rainbow after a rainy day.
Peace,
JoleneOh, Danielle- I am so very sorry to hear of Jim’s passing. How brave and strong you were for him. My thoughts and prayers are with you and your family now. May you soon find peace and comfort in your loving memories.
Jolene
Dear Danielle and Jim,
I am sending you both hugs and sending God my prayers for you.
When my dad (also a Jim) was hospitalized…the first time, it was wildly botched. And dad was discharged to a ‘nursing home’ for rehab. Not a good decision…IN OUR SITUATION…as dad was misdiagnosed. Dad landed back in ER, and hospitalized. They were going to discharge dad again, until I spoke loudly against this decision and my husband (another Jim) backed me up. We got our requests heard and the doc came back, tail between his legs, apologizing profusely and calmly told us dad was full of cancer, though they didn’t realize it was CC initially. They decided they would release him and bring him back for some biopsies…and the doctor already signed the discharge papers…which, as anyone knows, creates an insurance nightmare to get reversed. I was visited by the hospital social worker and someone from the hospital utilization review board who heard I was concerned about dad not being strong enough to be discharged prior to the biopsy.
I was strongly encouraged by these two gentleladies to file a grievance which would then be reviewed by a committee in the Mpls area thus allowing dad the opportunity and time to get his platelets up in order to have his biopsy. I received word from the review committee that based on the info they received, dad was in no shape to be discharged from the hospital.
Now, this was our situation…and every situation is different. However, I can’t help but wonder if the hospital Jim is at has a similar policy. Also, a good social worker would/should be able to assist you with temporary assistive devices that you may need if he is discharged to your home.
My dad was discharged from the hospital and went to a different nursing home for rehab/physical therapy for awhile. This situation was wonderful. Dad was happy, and I was able to get things readied for him to come to my home upon his release from the nursing home.
Danielle, I know that you have so much on your mind, and a strong need to be by your husband’s side. Do you have anyone-sister, brother, cousin, friend-that could help you with some of your needs, to speak on your behalf to get things arranged while you care for Jim? Like everyone else, I am concerned about the bed sores. Dad had horrible sores all over his body from the first nursing home. And I am so sorry you have to see your husband suffer so much.
Please take care of yourself. And I am so glad that you found this site. It was a godsend for me while I cared for my dad. You have, no doubt, already found great advisors and cheerleaders.
I wish you both peace,
JoleneI will preface this by saying this was our experience:
Towards the end, my dad was feeling increased pain, though we didn’t have any idea of the intensity. He expressed it as being really uncomfortable and he seemed more impatient. He was using fentanol (sp?) patches and oxycodone while at home. When he came down with an infection and needed to be hospitalized, it was there that we realized it was only a matter of days. He was in a lot of pain, so I had him placed on round the clock morphine drip. He was much more comfortable, and his agitation was gone. In retrospect, I wish I had pushed for more pain meds earlier. I remember my cousin telling me (she had lost her husband to cancer) “Morphine is a cancer patient’s best friend.” I saw through dad’s behavior that it was true…in our situation.As for my siblings…my parents and I made legal arrangements (health care directives, Power of Attorney, etc) when dad was initially diagnosed. Both my parents named me as their SOLE representative. (Mom was diagnosed with advanced Parkinson’s Dis. 5 months before dad’s diagnosis). They also made it very clear to my siblings that this was their decision and their desire. I do keep my brothers informed with everything that goes on, and, naturally, get their opinion on different things, but ultimately I made/make the decision. I spend a lot of time daily with my parents…with my mom, now…and we talked about everything, therefore I was prepared to follow through with their directives.
The hard part, then, is I am left alone to provide the round the clock care. One of my brothers who really wants to be here to help me and my mom, lives in Florida. One of my brothers has MR/cerebral palsy. My youngest brother doesn’t seem to want to be bothered>he lives an hour away. Oh well.
You are doing an amazing job, with all the challenges thrown at you. One piece of advice…make sure to take a few minutes (more if you can) to breathe. To do something for yourself…a cup of coffee on the front porch, play with the pet, garden, lose yourself in a goofy sitcom (mine was Frasier)…do something for you! Advocate for the advocate! As you know, the road ahead will be very bumpy…
As with all the patients, caregivers, survivors on this amazing site, I will keep you and your family in my prayers. You will find the greatest allies on this site.
Peace be with you,
JoleneTonia,
I’m very sorry for your loss, and for the pain you are going through. I can appreciate the shock you feel at the speed with which this disease claimed your grandmother. I still am numb over the loss of my dad, and its been 4 1/2 months. I hope that the memories that you have with your grandmother will bring you some peace during this holiday season.
I’m passing along some advice that my cousin gave me after dad died…and she still reminds me of it periodically now> breathe. The panicky feeling will creep up on you for awhile, at least it does for me. Just remember to breathe.
You and your family are in my prayers.
JoleneOh, Pam…count me among the many who are so happy for you and your family. I will think of you all on Saturday and send along best wishes and joy on this wonderful day!
Jolene
I just remembered that dad loved his candy. And because he was diabetic, he would eat a variety of the sugarfree candy frequently. Many of the sugarfree candies use aspertame as well.
My dad was a huge fan of Diet Pepsi. In earlier years he used saccharin (sp?) tablets to sweeten his coffee eventually switching to Sweet ‘N Low.
