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04-03-2016 07:44 PM
So I learned yesterday that one of the ladies who comes into our house to help me care for my husband can no longer help pull him up in the chair. This doesn't sound like a big deal but it is. My husband doesn't have the ability to push himself all the way back in the chair and I don't have the physical ability to pull him back all the way sometimes either. He is becoming more and more debiliated and I'm having trouble coping with his loss. I have other ladies I can ask to help, it's just things changing again, it gets so frustrating. It seems about the time I feel I have everything under control, BANG! Something happens. It would be easier if I had family who cared but I don't. Yes, I have friends and I do share with them but I'm careful not to over share because I want to keep my friends. I also have a therapist and that helps but there are times like now Sunday morning when stuff just hits me and I just feel overwhelmed and wonder how long can I go on?!?! So I write on here and I really appreciate your reading and your understanding. Thank You! I'm off to get my sweetie up for the day! I hope your day is a good one!
This business of lifting him in his chair is a tricky one. I have 2 suggestions. One is to get a chair that has a lift in its seat. not only are they recliners but the seat pushes up and helps a person to stand. A marvelous invention! If you can't lift him up while he's sitting in the chair, why not get him up and situated again in it. Is there any surface you can put on the chair that will keep him from sliding down again?
Secondly, can you schedule someone strong to come and help you get him up at a crucial time of day? Like, a neighbor who comes home at 6pm: would they agree to come over and lift them with you? The last lift of the day before you get him up and into bed?
Oh and btw, a semi electric hospital bed is sometimes covered by Medicare, and can come in super handy to get someone weak in and out of bed. you lower the bed, lift the head of it with the touch of a button, use the side rails to get him to grasp them, swing his legs down.... really helps your back.
what solutions have you come up with?
04-02-2016 03:07 PM
Many of us know exactly what is going on and what you are going through now and into the future. It is hard, very hard.
My husband and I not only were man and wife for 38 years but we worked together too - so we were together 24/7 - that did not change after he became ill. Once told that his life would be over soon, we turned to his bucket list of him participating in our daughters wedding and he did - wheel chair, O2 and all - but what a glorious day. He rose and danced with our daughter to BB King "What A Wonderful World"; he picked the song.
Two weeks later, I was where you are today. In our home just how we had planned it to be . . .
A life changing time, for sure, definitely not easy - time, faith, putting one foot in front of the other, one day at a time, day in and day out, has helped me these last 10-years, In one way, it went by sooooo slowly but in another, those years trekked off pretty fast.
I, and I am sure many others who read your post today, will be thinking about you - yes, her journey is about to begin - as my beloved husband said before he entered that peaceful rest . . . .
" the greatest adventure of a lifetime ! " That was just the kind of person he was.
I still miss him and always will but there have been many joys in those passing years and ones which I share with him in mind, heart and spirit.
May peace be with you and I leave you with a rememberance comfort -
If I should go tomorrow
It would never be goodbye,
For I have left my heart with you,
So don’t you ever cry.
The love that’s deep within me,
Shall reach you from the stars,
You’ll feel it from the heavens,
And it will heal the scars.
04-02-2016 02:42 PM
04-02-2016 02:20 PM
- My wife is in hospice now and her life is slipping away. She has been kept sedated until she crosses over. God bless her and keep her. She is no longer in pain. She is sleeping comfortablly and peacefully. The end is near and her journey is about to begin. I've been caring for her for so long and we've never been separated. All of a sudden, all the hours of caring for her are insignificant. I would do it again if I could hold on to her for one more day. My life is about to change, but I don't know in which direction and I don't know how I'm going to do it.
03-28-2016 05:03 PM
I am having one of those days. I don't know why I feel so yucky but I do! I feel emotionally drained and physically exhausted and I'm doing everything I can to take care of myself! My husband is now getting up at 10AM has breakfast, is helped to drink 5 glasses of fluid betwenn breakfast and lunch at 1Pm which doesn't always work. If the aide and I can stand him up we toilet him and then get him resettled for lunch. The aide leaves and I give him lunch and help him through that. He's usually so tired by noon that he doses off before lunch, while on the commode and during lunch. So after lunch I put him in bed. He seems much more comfortable in bed and typically will sleep fairly soundly during the afternoon and through the night. But not today. Today he has been restless after sleeping for a good two and a half hours. Throwing the covers off and pulling on the siderail. I think he needs to poop as he hasn't for the last 3 days with today being the 4th. I've given him Prune Juice a couple of days but no results yet. I just feel so inept! I know I'm doing all I can to keep him comfortable and healthy, I'm just frustrated. I hate this disease. And I know for a fact that things will change AGAIN! As soon as he poops he will feel better, so will I and once again life will go on. I know you don't have solutions, I'm not expecting any solutions actually. I just needed an ear! Thank you for reading! I hope your day is going well!
03-24-2016 02:38 PM
03-22-2016 06:50 PM
My daughter, who is our only child, moved in with us along with her husband and two children. She has really been helpful, especially in the administrative side. She has been unable to fully accept the eminent death of her mother, they are very close. She is coming to accept what is about to happen now and is beginning to talk about it. My wife is now back in the hospital and has gotten worse. All the end stage symptoms are showing. She wants to go home until the end nears and then return to the hospital. I will do everything I can to meet her wishes, but it so hard to watch her go through this.
Regarding faith, she taught me about the mercy of God. Her faith is much stronger than mine and was working towards becoming a nun when I stole her away. Our parish priest has always been close to us and is critical to her spiritual well being. He told me once that her spiritual presence was unusually strong, that of most nuns. She tells me she is not afraid of dying, but only wanted to see our 8 and 9 year old grandkids grow up and be part of their lives. This is why she has kept on fighting.
God has given us 43 wonderful years of marriage. I promised her adventure before she said yes and I kept my word. We grew up together, had many great adventures and have lived in many places. We did live life to the absolute fullest. Our daughter, the spittin' image of my wife, is working towards her PhD in Special Ed, so we have no complaints.
We will be talking hospice or palliative care before I take her home. Oh how I will miss her until we reunite and have the greatest adventure of them all. Thanks
03-20-2016 11:26 PM
jMACFLINCOLN - I am so sorry. It takes a huge amount of patience and the frustration level is so high. Sometimes, I feel that I am losing most of my personality and becoming only involved in my spouse's care. And he is able to physically take care of himself. Do you have a college/university in your area that has a stroke therapy department? Sometimes they can help with therapy when medicare is limited. All my best wishes. Mars
03-20-2016 06:51 PM
I have been with my husband all day every day since he had brain surgery in December of 2014. Unfortunately there was an undectected problem resulting in a stroke that took out his right arm and leg and left him with aphasia. We were 5 weeks in the hospital, 2 months at a skilled nursing rehab, 1 month at an intense acute rehab and then home. Since May he's been in the hospital twice--once for seizures he began having, and again for a serious intestinal infection. He gets minimal therapy with Medicare--and he needs total care from me 24/7. He can't stand or walk, he can't do anything meaningful with his right hand/arm, can't use the bathroom, and he still has problems finding words and expressing himself. Being a caregiver is not a job/title anyone wants. Since I am an older person, I wonder how long I can keep going. It is very hard to do all that needs to be done everyday--and most things that can be ignored, don't get done. There are days when I am so frustrated and angry--and I take some of it out on him knowing none of this is his fault. The weight of the responsibility for decisions about him and his care are crushing because I take it so seriously and want to do the best for him. Nothing is simple anymore...I am grateful we have an adult son who lives with us and who's help I count on every day. Someone else said that people not in our shoes don't undersatnd--and that is true. I never could have imagined the existance we have now. Nice to be able to "vent".
You don't have to be his only caregiver. You and your son could hire someone to help. Even one day a week for 4 hours would allow you time to get out of the house, get a haircut and go to Costco, and come home.
Maybe your county has a respite care program. You can get financial help for caregiving to give you 'respite'. Find out what's available in your county or city at www.eldercare.gov and type in your zip code.
What would really help you?