Hi folks, I haven't posted in quite a while but have kept up with Joan's blogs and the board pretty consistently since I joined in 2008. I first began seeing short term memory issues in DH along with beginnings of flattened affect in 2005, so this has been a long slow haul. He is now about to turn 74 and I am 71. He still loves interacting with people and telling his "stories". A trip to run a couple of errands and perhaps eat lunch at the neighborhood diner tires him to the point that he will usually end up dozing in his favorite chair for the rest of the day. Eighteen months ago I managed to get us moved from our home of 27 years (split level) to a one level ranch with a garage and he has adapted really well. The reason for the move? My knees were giving out and I had already had arthroscopic repairs done on both. Now I am about to get the left one replaced (in 2 weeks) because the pain has gotten really bad and I am out of options. Our daughter will come up from her home in the next state to be with her dad and be my support and spokesperson on the day of the surgery. Her two brothers will be on hand to distract and entertain DH as needed. DD has to go back home to her young sons and her job the day I expect to be discharged from the hospital to the residential rehabilitation facility. On that day DH's sister and her hubby arrive from out of state to stay at our house and keep an eye on DH and make sure he gets his meals. They can only stay one week and my rehab stay will be at least 2 weeks. I have not yet figured out what to do with DH at that point (and of course DH thinks he is entirely capable of taking care of himself .) . He would not remember to eat or take his meds on schedule. My biggest fear is that he would suddenly decide to take off in one of the cars. (He has not driven in a couple of years, but his hobby cars are in the garage bc he "is going to start tinkering on them as soon as the weather warms back up ." I have been given a couple of names of home health companion/caregivers but am not sure where to go from here with a plan. One of our sons could stay with him at night but works from 9 to 6 5 or 6 days of the week. The other son could visit but would be unable to help with much bc of a severe physical disability (spinal cord injury/paralysis). So there you go, folks. I am open for suggestions, especially from those who have been in a similar predicament.
Sorry to be so lengthy but felt it couldn't be assessed without a summary. I should have included that DH is in excellent physical health with no arthritis.
Susanhere, what a stressful situation you are in. I am just taking a wild guess, but perhaps you should call your elder care association in your county to see if they have a list of services and caregivers. I know they have the "meals on wheels" probably nationwide. Also try a nursing home. I bet there would be some CNAs who would love the extra money to sit for him. Good luck and wishing you a strong and speedy recovery. Love, Christine
It looks like you need to hire a private-pay aide for that last week, to work during the day while your son is at his job. Then your son could stay for the evenings and nights. Or just hire a live-in for that week, if you think it would be too much for your son. (Yeah, not cheap, I know.)
Thank you so much for your advice and your wisdom, Elizabeth, Mary and Christine.. I thought. I had a person whom DH knows very well but she has taken a part-time job recently. I will make some calls today to the places you suggested . Again, thanks for your help and support. I cannot imagine surviving the journey without Joan's Website.
WOW - what a predicament. No idea what I'd do in this situation. I'm pretty sure none of the home care agencies would send anyone out to baby sit with a house out in the country full of loaded guns. Bus stop?????
Hope a workable solution is found so you can concentrate on the surgery and rehab.
Susan, another option would be to put him a facility for respite while you're re-couperating. Our local nursing home has a dementia unit and a rehab unit for people recovering from surgery such as joint replacements so ideally you both could be in a similar type facility if there's one in your area.
Absolutely call the area office on aging for their recommendations, ideas and resources.
Good luck with arrangements for you DH and your upcoming surgery.
I have been delaying having a colonoscopy but finally got the referral a couple weeks ago. Never heard from them. Last night I was laying in bed thinking if I am going to do it, it has to be before March 21. The neighbor lady that can take me and watch Art is moving then, so I won't have anyone after that.
It is hard when we don't have anyone, so I am glad you have your son to help out. Praying everything will pull together by surgery date.
Edited: just talked to neighbor, she is going a week earlier. So the only way I can get it done is to not have anesthetic or stay long enough for it to wear off. I have my prelim the 25th.
Oh Charlotte, I know it can be done without anesthetic, but I don't think I could have taken that!! Of course, when I had it done, I had the colonoscopy & endoscopy (both ends for the price of one! NOT!) I wish you well with that....thinking of you.
Goodness Charlotte, I would definitely recommend the anesthesia route. That being said, the staff will probably want some other responsible party there in the waiting room while you are having the procedure and expect that person to drive you home , also expect you to arrive an hour before the procedure is to begin. Means a long morning for Art doesn't it? Bless the neighbor for being willing to help you out. Thanks for the good wishes. Got a couple of leads from my counselor, whose grand daddy has Alzheimers, and will call them tomorrow.
Oh Charlotte don't do this with out the anesthesia. It is so painful. I tried that and my daughter-in-law has colitis and has tried it and will never go with out being sleeping. The med only last about an hour or so and then you have to stay for awhile but you will need someone to be with you and drive you home. Is your DH a veteran? If he is call your VFW and see if they can help with someone to come and stay with your DH while you are gone. Also try the residences in your area to see if there is a PSW who us off that day that would come and stay with him. If he was a union member try them. Try your church. I just hate to hear that you have no one as I know how that feels. When Kevan was home I had a hard time getting anyone to come and stay with him both because he would fire them or there was no one available. Is there a day care near by? I just get so angry that no one is there to help when we need it. If it were any other disease they would tripping over themselves to help. I wish I could help you!
Charlotte, I doubt a doctor will do a colonoscopy without anesthetic. I was able to be sedated rather than knocked out but they needed the anesthesiologist to agree to it. I said that I didn't have anyone to pick me up. I walked to the hospital (about a mile) but they made me take a taxi home. I was escorted to the taxi, so the doctors take the affects of sedation very seriously.
The procedure itself was simple for me. I didn't mind being awake and I didn't feel any pain. I had my iPod with me. They told me I would have to take the iPod off if they needed to snip anything.
Charlotte, Can you try to get the preliminary exam and procedure itself moved up by several weeks? You would probably need someone with clout in the medical field to do that - how about your PCP? If that doesn't work, how about trying the gastroenterologist who will be doing the procedure? You have nothing to lose by asking.
If that doesn't work, try Jazzy's suggestions, especially your church. Someone at the church (maybe even the pastor) might feel comfortable staying with your husband if they already know him. I'm not sure about veterans' organizations - they seem to mean well but I never got the feeling that direct care or companionship of impaired vets was their specialty.
susanhere, I wish I had a suggestion for you. It really seems that even if you have an aide coming in each day (or for 24 hrs.), that person should be supervised by someone. Does your town or county have a senior services agency that might be able to direct you down the right path?
Myrtle, I wish we did have a church - I miss going but my husband wanted to stop a few years ago. He said he could not remember the sermons or remember the people, so saw no reason to go. We had only been going there about 6 months. I know I could have gone without him but I really did not like the church - he did is why we stayed there. I did call the gerontologist office to get put on a cancellation list so if they have a cancellation I can get in. I can't afford a taxi either. She is also going to leave a week earlier. If I can't get it done before she leaves I will skip it. I do have an appointment next week with someone at the Aging and Long Term care to see what is available, etc.
My mistake. I remembered you saying something about your faith and just jumped to that conclusion, which was unwarranted. I hope that one of the other contacts you made comes through. So frustrating.
I assume the neighbor who is moving is the one who you and Art have been friendly with for awhile and who has been looking for a job elsewhere. I know you're going to miss her.
When I had my colonoscopy done (twice) the center sent transportation to and from for me and later for my son for no charge. Check with your doctor or center where the colonoscopy will be performed maybe they also provide transportation at no charge.
Susan, if you are having a total knee replacement check out Bonesmart.org. It is a chatroom for people who just had knee replacement or hip replacement and is run by a orthopedic nurse for over 50 years. I learned more about what I was experiencing in recovery on that site than from my doctors and nurses. They leave you in the dark. But you get first hand information and advice on there anytime day or night. First advice I would give is no physical therapy for 3 weeks, then after that only gentle therapy, you should never feel pain after PT, it you do, your leg will swell and set you back quite a bit. good luck
Wow, Joyce, that is a really different take on physical therapy than the one I have been hearing about from nurses and TK patients in my church. I will definitely check out the website you recommend. I am getting a Conformis custom fit replacement, reputed to have somewhat of a shorter recovery time. My group of surgeons strongly recommend going straight to residential rehab when you are released from the hospital after 3 days , but apparently the goal is to get the patient functioning as soon as possible. It sounds like torture, doesn'tt it?
myrtle - no problem. I wish I was attending a church. Thankfully one does not need to attend church to keep the faith.
It seems a lot of illnesses now have online support groups. This is one example. The hystersisters I found is another. The cancer forums, and the one for knee replacements. Glad they are out there.
An alternative is a virtual colonoscopy. You still have to do the awful prep but no anesthetic or sedation. Not as good but this is what my wife had since she is on blood thinner.
susanhere, I had 2 TK replacements 25 years ago and now badly need them both replaced again (I was 37 with severe RA). I know the whole surgery, recovery and rehab process has improved significantly during that time but I too have been advised to go into sub-acute rehab immediately following the hospital discharge. It entails 3 hours of rehab a day until you are totally functional (back 25 years ago that mean being able to bend your knee at 90 degrees). Given that my husband is still home and it would be difficult for me to recover at home and have out patient PT, I will opt to go into rehab so I can have a chance at a good and total recovery.
Joyce*, I've never heard of such a long time without PT. Thanks for the website.
LFL, On the Bonesmart.Org website, there are several people who has that same philosophy from their doctors, I also have a friend here in Tampa Fl who also did the therapy herself, no Physical Therapist. She did her heel slides and leg lifts and walking only to the bathroom and kitchen, around the inside of her house for 3 weeks. Then short jaunts outside to walk. I had inhouse physical therapy for 2 weeks which caused soft tissue damage. I am 10 months now and just starting to be able to walk around the stores without much pain. Everyone is different but if you have a gentle therapist that doesn't insist you have to feel pain to be better, then you can achieve a better outcome. Gentle stretching and massages are the best therapy. I wish I had known about the website sooner,I learned so much from other peoples recovery blogs just as we do here. So many times we need help dealing with life in so many ways. it is so good to be able to learn from others going through the same rough times and yet turn out okay again. That is the best thing about the Internet!
Joyce, the website you suggested is very informative and gave me a lot to think about. LFL, Since my hubby is at home and getting very clingy, I knew the only way I could recover is to go to the residential post-surgery rehab. Since I first posted I have learned from my OS's nurse that the average stay is seven to ten days. With my SIL promising to stay at least a week (starting the day I am expected to be discharged from the hospital ) I may have DH's supervision covered. My daughter is willing to come back for a few days if I need her. I am working on lining up someone to come in and help once I get home. I have to work on my assertiveness so I can tell the therapist no if he/she is being too rough. Advice is not to do anything that will increase swelling. Thanks everyone who has responded. The plan seems to be coming together.