For the last week I have been having problems with pain in my hip area. I finally decided I had dealt with it long enough and Wednesday called the doctor's office. I left my message with a triage nurse and within minutes my call was returned: I was to go to the hospital immediately. A Doppler study was to be ordered on the leg to rule out a blood clot. Husband and I proceded to the nearest hospital. As my paperwork and insurance was being taken I had a horrible thought of "what if I am admitted to the hospital what will I do with my husband?"
We moved here from out of state to be closer to family. Much to my surprise and huge disappointment neither his family nor my son and his wife can be counted on. My son, I was told by my dil, is having depression issues and high blood pressure. She said I am "toxic" and by talking to me I cause him grief because I "dump all my garbage on him and run to him with every little thing." I could go on and on about her, but you get the picture. So here I am at the hospital worrying about who will take care of him.....who will give him his medicines etc. Not his family...not my family...new to area so "what a revolting development this is!"
My question......I am trying now to get things in place because we all know "things happen". Spouse does not go to daycare....respite has never occurred and I don't think I could get him there....any suggestions. I know that I could not only benefit from this advice and suggestions, but other members as well.
You are so right about this being a wake up call..I think we all do think about this but are so busy we push it back to the to do later basket...In my case, all things being good, I have 2 caregivers that help here 3 times a week plus my bil who could come to look after the hubby.
In your situation, first try not to panic. Perhaps the ALZ Assn there could help assist you in locating a facility for your DH.
Is there any possible way you could pack up, after you are feeling better, and return to your "old digs" where you did have the support of friends?
Lorrie, Thanks and youre right we do need to take care of ourselves. It's very difficult, as an Alzheimer's spouse caregiver, find balance in providing for them as well as providing for ourselves.
Mimi, It is not possible to return to my "old digs". I moved across country from the Midwest to Arizona. I sold my home there only and purchased a home here (at the strong encouragement of both my son and his wife) This move was difficult for my husband and shortly after we moved here he fell off the cliff. When that occurred my son and dil bowed out. Because of the demands of this disease I have not had time to get involved in the community to meet new friends. I never thought that my world could or would turn up side down so quickly.
Lullie, I was taken by ambulance with my first TIA. They were not sure at that point what it was and were treating me as if it had been a heart attack. I had Lynn with me and you can imagine how that made my vitals skyrocket. Long story short they needed to keep me overnight and wanted to keep me hooked up to a heart monitor. I had no one to look after Lynn, I couldn't stay. I had to sign papers that I was releasing myself against doctors orders.
The very next morning I got a call from social services. They offered many services that would be very helpful to most people in our situation. If Lynn didn't have the aggression issues we could have used most of them. They did get us assigned to a social worker who came to the house monthly. She was wonderful with us and I would recommend everyone at least talk with them, they know about the services available and can hook you up with the right people.
They did work with me to try to implement an emergency care plan in case this did happen again. None of our area AFL/nursing homes would take Lynn with the aggression issues he had. She even went with me to the facilities to plead our case. In the end it was decided if it happened again Lynn would have to be put in the geri-psyche ward of the same hospital I was in. Some choice ....
I hope your hip pain has lessened and that your test results bring good news ((hugs))
I am sorry that you had to experience this horribly event! What an absolute nightmare. I do hope that you are doing well.
I am assuming that the social worker you are referring to was from the hospital you where you were transported. Monday I will contact a social worker at the nearest hospital. Thank you for this wonderful suggestion!!!!
I did call the alzheimers social worker in my area yesterday (Friday) and she email several "geri phyche hospitals" in my area. I really don't like this idea and think it could and would cause more behavioral problems than I already have.
Also check with agencies that supply home health care workers about setting up emergency services. Not ideal since the person coming in would not be familiar with your husband, nor he them. But better than him being home alone. Respite care at an ALF might be better.
I had a severe leg cramp a month ago that resulted in a visit to the ER. I was concerned it was a blood clot, as was the ER doctor. All was well but I had the same concerns.
PaulC, Hope your leg cramp is okay. Did the doctors check your potassium levels? If not, you may consider having that done. Low potassium levels can cause terrible muscle cramping and can cause other serious complications. Yes, home care is another option. Knowing my husband's personality he would be more accepting of this than respite at ALF. On the down side: Having some "stranger" while I am away does concern me. All of us here are continually "flying by the seat of our pants". Best wishes to you.
ii am sure there are professional caregiver agencies in your area. this is one of the primary reasons to get help sooner than later and your spouse accustomed to someone to stay and look out for them. if family isn't able or wanting to step up then its best to already have an agency that can supply a helper at a phone call. yes they can be resistant at first to someone new in the home but its for our personal security as well incase something along these lines happens to us. we just have to make it happen. many times these decisions are in our hands and our spouses may object but if you persist there will come a day they will accept it. or like the others say a stay in respite at one of the local ALF is also a possiblitly. many will take them for a week or so. but you have to look into and visit and make plans while you are able and healthy before an emergency happens. remembers murphys law.. unfortunately it happens more often than we like.
Divvi, Yes, you are correct there are many professional caregiver agencies in my area as I live near a large retirement community. However, I have only lived here about 9 months and got so caught up in the move (establishing doctors ...dentist....and the basics of life). He fell off the cliff quickly....unbelievably quick so I was place in a frenzy . I blame myself for putting this on the back burner, but we do the best we can. I do hope my post will alert someone "murphys law" BTW, This morning I discussed with him home health care. He has accepted this ( I believe it was the way I presented it...to take care of our diabetic dog). Guess so much is on the presentation .... (don't know if he'll remember this tomorrow, but he's okay with it this morning) Thank you so very much for your input. I wish you well in this journey
lullie, good idea to present from the dogs standpoint. its how we always say, any fiblet that you think they will believe is always the best choice! my journey is winding down. a very long road and those of us who have been here a while would like to think if we had it to do over, we would have made some more prudent choices early on. its our only effort here to try to put it out there what our collective experiences bring for those who follow. all of our gains and losses along the way are invaluable info those those who follow. happy to hear you have moved up to the front burners:) and will get that help you need! you will be wondering why you waited once everything clicks into place. best of luck to all of us for sure.
Lulliebird, Where in AZ do you live? I used to live in Yuma..loved it there..hubby didn't like the heat. I loved the endless sunshine. Now we are in the People's Republik of Kalifornia as some call it now..ah yes...
Prescott is pretty and has the seasons. We had friends there once but they are both gone now.
I think we are in a world of "I can't believe this is happening" for a lot of things...I know I am. So we don't plan for the what ifs until it smacks us right in the face.
This is where this site and other sites are so important by reading what others are going through and what they did it about it has made me aware of things I was in denial about. It has made me face up and make a plan on how to deal with different situations...not all of them but some.
lulliebird, my leg has been fine, it just took a week to fully recover but I was much better after a day. The big worry was a possible blood clot, I had some of the symptoms and my father had blood clots. But I'm fine and no sign of any pain. Thanks for mentioning the potassium levels, I have my annual checkup in 2 months and I will mention it to my GP.
divvi, The valuable information you and others, who have been caregivers many years, is so appreciated. Text book learning, has its place, however from one alzheimers spouse caretaker to another we can relate and share our journey, it's struggles and heartbreak. As your journey is "winding down" you will again face new and different challenges which will play havoc. Please be easy on yourself. I will be here for you as you have for the other members. Best wishes & ((hugs))
Mimi, I live north of Phoenix. Prescott is about 90 minutes from my house. I am very familiar with the town. It does have the seasonal changes (but still hot summers approx. 10 degrees less than Phoenix) The wind is something I don't care for and it does have plenty of that. The wind was a menace to the firefighters in trying to contain the recent fire. If you are ever in the area it would be nice to have lunch and get to know another (this applies to any board members!)
Amber, so very true... the disease smacks us in the face, punches us in the gut, and we are forever riding that rollercoaster with its twists and turns never knowing what lurks ahead. We know what the stages, as we enter each one, but no matter how well prepared we are we have the unexpected knock us down.
Paul---yes, please have doctor check them. I take a diuretic which can lower the potassium levels. Also, sweating in the summer will deplete those levels. If cramps continue I wouldn't wait 2 months. If your potassium levels are too low or too high they can cause cardiac problems. Not to worry you, but just a precaution. Wishing you a good report!
paulc, low magnesium levels can also cause cramping. I have this problem as well as low potassium, i take KDUR 10 potassium and slo-mag magnesium both prescribed by dr. when i doubled dose of magnesium haven't had cramp since, knock on wood.
lulliebird, i got an aid who wanted extra work who worked at an alf. she came to stay with hb while i went to church. also would come if needed. perhaps you could look into local homes and see if anyone was looking for part time work. after you get aquainted with someone they probably would care enough to come in an emergency. my gal would have done that. my hb is now in afc home and they are having some problems with his behavior, mainly sundowning.
Yes, the diabetic dog is a good reason to have a caretaker, I told my dh we were having someone in to help me clean. And she does clean! After a few months we added a new person on a different day and he never said anything about it. He was used to seeing new people and just takes it for granted. I did stick around the house for a hour or so to get a new person to see what I want done. This next week I will be having another new person on Thursday.
dorieMI, Thank you for you suggestion. I would love to find an inexpensive aid however, what I am looking for is a plan of action in case of an unforeseen emergency. I am leaning on a licensed and bonded agency who is experienced in handling problems with AD and FTD. My spouse has behavioral issues. I would need to discuss this immediately so they are prepared. Not all agencies are willing to accept this assignment. I appreciate your input! Lullie
MaryinPA, Thank God we are allowed to use fiblets. I am learning to be very creative at them....still not totally comfortable with them, but they are a necessity! Best of luck with your newest Thursday caretaker!
Everyone, the cramps have not returned. I will get tested but I suspect they were stress related.
Keep in mind that if a paid caretaker does housework, you may not deduct the time they spending cleaning, etc as a medical deduction. My caregivers record the time they do cleaning and I don't count those hours when calculating deductions. My accountant said this will help a lot if I am ever audited.
One advantage of moving to ALF is I won't have employees anymore.
Glad to hear that the cramps have not returned. Possibly it could possibly just be an isolated case of muscle fatigue??? Of course remember, we've all heard the adage "don't assume...." I am still experiencing the hip/pelvis pain. This Friday had an xray. Wednesday I have a follow-up to see my doctor. In the meantime, I will be proactive in getting my ducks in a row when dealing with the unexpected.
Yes, thanks.... I am aware of documentation of medical related vs. cleaning . What a nightmare to be audited, as if we don't have enough challenges! With homecare and employees in the home.... we must also keep in mind workers' compensation! I have check my state and as long as I have less than 3 employees I do not need to carry coverage (of course, each state varies as the laws apply)
Yes, I agree about ALF advantage and no employees. That's a huge benefit! You are very fortunate that you have long-term coverage. My spouse, inspite of knowing his family genetics (father, brother, and two uncles), elected not to purchase it. Now it will have to come out of our long hard earned savings and be "self pay"
I do hope that the placement transition of your DW goes smoothly for both you and your wife. You sound like a wonderful loving husband and caretaker. I wish you happiness as you move forward! Lullie
Actually, I don't have long LTC insurance. Working from savings, retirement plans and help from her family. If it wasn't for my large mortgage would be much easier. As long as I keep my job I'm ok.
You are very blessed that your wife's family is supportive in moving her into a ALF! I do believe that, if and when the time comes, I will become the devil with the horns and pitchfork! This is very refreshing indeed!
lulliebird - one of the places we considered to move to after leaving Nevada in May was Prescott or Camp Verde. Sometimes I still wish we had but we are up in Washington.
Charlotte, What a small world that you considered Presscott...or Camp Verde! We would have almost been neighbors. Hey, if your even in this area...please let me know. We could get together! That would be awesome!!!