After reading several related comments on various recent threads, I thought I'd chime in myself.
My wife, Clare, has Alzheimer’s and for the past 10+ months has been living in a lockdown dementia unit of a nearby assisted living facility. Prior to placement, I was her 24/7 caregiver. I visit with Clare every day without exception, and I take her out to eat, to get together with friends, or to enjoy recreational activities several times each week. For the first six months that Clare spent in assisted living, unless I was taking her out for dinner or to get together with friends, I came to see her each day from 3-5 p.m. At 5 I brought Clare to her dining room for dinner and I went home. When I did take Clare out for a longer period, I’d have her back in time for her 7 p.m. activity. For the next four months, however, I doubled my daily visit time to 4 hours each day. Clare had become increasingly anxious from the time dinner ended until her next group activity began at 7, and sometimes remained anxious throughout the rest of the evening. I received calls at home from aides asking me to try to calm Clare down over the phone. On several occasions, I returned to the facility to calm her down in person. I was told that Clare was increasingly requiring individualized attention from an aide at these times because she was so upset, but the facility was not staffed sufficiently to allow one of their aides to spend time exclusively with one resident on a regular basis. The facility social worker suggested that I either hire an aide or stay with Clare myself between 5-7 p.m. to see if that lessened Clare’s anxiety. The hope was that if Clare was not anxious heading into her 7 p.m. activity, she might remain calm throughout the evening.
I decided to stay those extra two hours and if that didn’t work then I would hire an aide. And that worked. I had to give up some activities that conflicted with the new four hour visiting time, but Clare’s happiness remained my number one priority. I would take her out of her group at 3 each day to visit and, unless I was taking Clare out for dinner, I’d bring Clare to her dining room at 5 while I ate a “bag supper” in an adjacent room. At 5:45 I went to the dining room to pull Clare out again get so we could be together until 7. But after doing this for more than four months, I realized that I had unknowingly re-entered “caregiver prison.” There’s no other way to describe it. I felt as if I were in jail. I felt trapped and started to resent the time I was giving up each day. I would often rush through activities that ended at 2 or later to allow myself time to get to Clare at 3. My “bag supper” was usually several PB&J sandwiches and/or “fast food” ... but then often I’d eat a “real” supper at 8 p.m. I had gained 15 pounds during those 4 months and I was mentally, physically, and emotionally exhausted each evening. And, no doubt, I was also mildly depressed. My support group as well as some family members suggested I wean myself away from those long daily visits, but I resisted ... until I realized that I had re-entered "caregiver prison."
The first time I entered caregiver prison was severtal months before Clare's placement. Except for the 26 hours per week she was spending in social day care programs, Clare was with me every minute of every day. I felt like a prisoner at home, unable to leave Clare alone unsupervised. I had no privacy ... wherever I was, she was. Clare would not leave me alone when we were at home. Clare’s placement in assisted living became my “get out of jail free” card. The lessening of stress was palpable once Clare was placed. I had my freedom back. I had my privacy back. I had my life back. But then 6 months after placement, I let myself get lulled into forfeiting that freedom and privacy by agreeing to spend that extra time with Clare each day.
My sincere advice to fellow caregivers is simple: Be there for your loved one, but do not allow yourself to enter caregiver prison! One you make a placement, let the assisted living facility assume responsibility for taking care of your loved one. Remain a caregiver and advocate, but take better care of yourself. Visit your loved one, spend time with your loved one, even provide limited care for your loved one during your visits ... but do not let yourself get lulled into entering caregiver prison. You, too, are entitled to enjoy your life.
I am contemplating putting my husband in a facility such as the one you describe. I know how expensive they are. Why should you have to pay even more to have an aide come in to help? That makes no sense to me. Plus, your being there for so long helps the staff as well. I'll be happy to visit my husband but I won't be doing what I'm paying a fortune for them to do.
Acvann, I agree completely. The first year my DH was in ALF I visited for six or seven hours each day. On numerous occasions the phone would ring as soon as I got home asking me to come back to the ALF because he wanted to go outside and they did not have enough staff to take him outside to walk. Like a dummy I always went back and usually stayed until his bedtime. The facility even had a secure enclosed outside area where he could have been taken to walk by himself but the owner would not permit that. Her excuse was that she was afraid they might get hurt unless someone was with them. In my opinion they were just covering their butts! He was and still is in great physical condition. I don't know how they manage to handle it if the patient has no living relatives and has a court appointed guardian or an appointed adult social worker. Bet there is never a call made to those care managers to come back to the facility to care for their patients. I finally wised up but can't believe it took me a full year to do so. It was definitely another year spent in caregiver prison.
My husband was in ALF for a very limited period of time. I'm going to comment anyway because I am so angry after reading these posts. acvann- what I take from your post is "if they can get away with it they will".
I could echo Bev's post in its entirety. She is, imo, stating pure truth. Then when I read from AliM >> I don't know how they manage to handle it if the patient has no living relatives and has a court appointed guardian or an appointed adult social worker. Bet there is never a call made to those care managers to come back to the facility to care for their patients.<<
Then I steamed. Of course I can only speak to and relive my experiences but that does not mean for a minute that I believe I am/was the only one exploited. My rant is offered here for two reasons. One is to quell my rage, one is to maybe relate something someone might find helpful.
So, to respond to AliM- yes, the ALF's do make those calls: and the Care Managers and contracted social workers generally don't mind at all because from the moment they receive that text or call the double or triple time clock starts running and covers prep time, drive time, chart review time, break time, meal time, documenting time and return drive time to wherever they were called from- office or home. (Oh, and it may also involve actual contact with the resident...) If the contract hits more points, it can cover time for them to go from facility to office to home. If the clock starts running in the evenings or on weekends, or holidays: watch out.
So, the ALF in my husband's case was funded by the Bank of Abby. The Bank of Abby also had to fund a retainer to be available to calls to Care Manager, transport provider; any # of above and beyond what AFL would do. If the retainer would not cover an emergency or acute situation the Bank of Abby was required to pay and pay quickly.
If there is no Bank of Responsible Person, the ALF will, with permission of the Court, likely have POA to charge against accounts and trusts.
Home, hospital, rehab and ALF's are just different quads under the dementia prison roof.
Acvann, thank you for sharing your story. I totally agree with you about how easy it is to get sucked back into the caregiver role after they are placed. I had the placement person tell me that if the loved one visits too often that the patient does not learn to depend on the staff and then yes one is still in caregiver prison.
My story is somewhat different but I was finding that after putting my wife into her first ALF she was still absorbing a lot of my time. This increased over time and I was not spending the time I planned with my son. I was not visiting every day but there was the 30 to 50+ phone calls a day from her and I was more and more intervening between her and the ALF. She would call me to call staff to fix things for her.
The current ALF is a huge change. Instead of being 15 minutes away it is 1 hour and a half away. No possibility of emergency visits on my part to intervene. The ALF does not want me to intervene, they want my wife to learn to trust them (and this is a very long road for her) and depend on them. They do not want my wife calling me (her constant calling increases her agitation).
How often someone should visit a spouse at an ALF is different. But I do think that the amount of time you were spending with her was making it more difficult for the ALF to do its job. The staff should not have been calling you to help out, they should have taken control. Perhaps they should have asked you to visit less often or shorter trips. They should work with the doctors to examine and possibly change her medications. They should have been actively engaging with your wife and not falling back on you.
Unfortunately most ALFs don't do the above. I would think the locked down units would be better, they have better staff to resident ratios, but it sounds like this one lacked the staff training and executive direction. Which I think it is normal.
It is difficult to trust an ALF. After my previous experience it is doubly difficult because I learned to not trust the staff. Now I am forcing myself. Many people familiar with my wife's current ALF, which is all dementia, tell me I can trust them. Her sisters tell me to trust them (they attended the medical team meeting with me last week).
Many ALFs charge extra if a resident needs one-to-one attention, or over a certain amount of staff time. I know of an all-dementia ALF where the family needs to pay for a full time caregiver on top of the ALF charges because he has FTD and needs a constant companion. I asked about this with her current ALF and I was told this would not happen (which is good because they are much more expensive than the alternatives). There are extra charges if someone has to take her to an outside doctor (they have a complete clinic that most medical stuff is done on site) or activities off the grounds (even then someone had time to take her swimming next door so there was no charge).
A really good ALF will take charge, in a positive way, so the resident will acclimate and take the burden off of you. Unfortunately most ALFs are more passive and are not up taking up the baton for us.
The LTC that DH is in have taken steps to protect me from his nasty days. New Meds and asked me to visit in areas where there are always staff in an out. The new Meds have made a big difference and now he is still nasty with them but much more sociable with me. He will still become impatient if things are not done his way but it is much better. They suggested that I not be so available to visit on demand or phone calls. This is working much better for me. I am finding that the staff are not always trained to work with anything but AD. I had to talk with the directors about getting staff to not argue with him but to try to redirect. One nurse wanted to try to get him to compromise. He asked her if she had any training with bv FTD because if she did she would know that the word means nothing to him. It's my way and that is it. One other problem is that he is higher functioning right now but his memory is going and if they don't wear their name tags he gets upset and frightened. He may not remember them from one end of the hall to the next. I feels that when they are caring for residents with memory loss they surely must realize that they can't remember from one moment to the next. It must be frightening for them. We are moving back to Edmonton in the next year and I am starting a list of does and don'ts for the next LTC. I will have more support there with my family so they will take over much of the meetings. Your very right, they need to take charge.
I think it does take time for us to come to some balance and I also had issues with being asked to provide someone because they couldn't watch her one on one. I've heard others talk about what they expect from ALF's and LTC's and I can afford to provide what they ask but what I couldn't afford was for it not to work because no one else would even take her. All the letters said her needs exceed their abilities but what those letters really said was that the LTC wasn't going to touch something that was likely to take up extra staff and cost.
We spend more on her care than I live on in a year. Many of us give up a great deal to get this help and I think we're all different in what we exactly experience and how we transition to this. I also believe we are under serious strain during this.
However often we go we do start getting sleep and the 24/7 demand we've been deadened to does start to decompress. But as I've said many times I think one of the hardest parts for some of us is to find ways to refocus on the other victim of dementia and for some of us it's very difficult to even conceive of that.
I could have a team of ten watching over her 24/7 and what is happening to her is still going to happen. I think the realism of that truth matters ultimately in working to a balance of what feels right.
What chokes me up is when I listen to the thoughts that helping the survivor is selfish and so they treat that person with pitiful neglect.
For all the lies about Alzheimer's blared by the ignorant - this is the blind spot of the victims.
Timely topic for me. We visited DH's doctor yesterday for med/behavior review and any recommended changes. She said that now that his FTD is progressing more rapidly it should be easier. I just laughed and said we were hoping, but it isn't easier. We skirted around the issue of placement and I told her I can get up at 11:30pm in my own home without having to get dressed and drive to a facility to calm him down because the staff calls. and I can decide whether or not to give him a med without calling a doctor.
Although DH's 2 stays in LTC were brief (2 weeks ALF/4 weeks NH rehab- both in lockdown dementia units) I found that both were short staffed and were not well trained handling a young dementia patient. And yes, they call when the going gets a little rough...doesn't matter how much you pay. And if they can get away with it they'll have you come in every time there's a "problem", usually at night. And if you can hire a private aide to stay with your LO, so much the better, then the staff has one less person to care for (even though DON says the private aide cannot legally perform hands on personal care, yeah right). Unfortunately the truth is many facilities, even those that specialize in "dementia/memory care" are short staffed and their personnel, even the nurses, really need more training.
As paulc says "a really good ALF will take charge in a positive way, so the resident will acclimate and take the burden of of you. Unfortunately most ALFs are more passive and not up to taking up the baton for us."
abby* , I do apologize if anything I said upset you. I was just sounding off about my own personal experience. By catering to the ALF I now realize that half of my prison time was self imposed. I am also the only bank of responsible person for my DH's care and like Wolf, I pay way more for his care than I live on. I totally agree with you about the quads all operating under the dementia prison roof. I just know that I have been locked up in this prison for over ten years and I would love to locate the key to let myself out. Take care, abby.
Oh, no. I am not upset with you- maybe the best way I can say this is that I am upset along with you. I've always cringed when hearing the phrase "I know just how you feel" because I don't think anyone can know exactly how anyone else thinks or feels. So, I don't presume to say that, but instead say that I think you and I, and so many, many here, walk together.
Your post resonated with me. The ALF was 45 minutes one way. Arriving home after several hours with my nonverbal, agitated husband (FTD) I maybe had five minutes to feed and love the kitties before the call came. Husband had done XYZ and they wanted me to come back and take him to a still open urgent care 5 minutes away from them.
He was 6'2" and needed a two person transfer. My car is smallish. I had visions of them putting him in the back seat and while I navigated traffic he would strangle me. I refused. I said I could not safely drive 45 minutes back to them, could not safely drive my husband anywhere, etc. I asked that they call the on-call. Well, they didn't really want to do that because it was LATE!
(Turned out they did, and the verdict was that my husband in no way needed to go to Urgent Care period and certainly not that night.)
What a fine, fine line we walk. As I understood Wolf's post, there is so much danger to the resident and to ourselves if we do not make it work. They are private concerns that can evict.
AliM, it is good for me to "let it out". I am grateful to you for the kinship you provoked in me in your first post here and your concern above.
After reading a few stories here I am feeling better about the price of the new ALF, in that it eliminates some of the problems described in this thread.
abby, Thanks for your kind response. After a not so good visit to the NH, reading your response lifted my spirits. I feel as if you truly do understand. Sounds like you did "walk a mile" in my shoes while on your journey. You pulled your time in caregiver prison so the good advice you give is very much appreciated. Abby, my big mouth sometimes gets me in trouble so I wanted to be sure I did not alienate a good friend on this wonderful site. Sending a big ((hug)) your way!
Circumstances have my husband in a skilled nursing facility that is an hour and 40 minutes from our home. I'm working on getting him closer to us, but have accepted that it's going to take some time. My point to this post is to share that I have been forced to realize that it is OK if I do not see him every day. I even made it through today without calling more than once to check on him. I have slowly realized that he is much more agitated on the days that I am there! When I do get him back in our area, I will be thrilled to be able to be with him more easily and for longer times, but I have learned that I do not have to be there all day, every day, as I was doing before. The REAL Andy (sorry....I still think of things that way) would be impatient with the "helicopter wife" that I was becoming. My love for him is still very real, but my role is very changed. After 44 years of togetherness, I have had a tough time accepting this new and awful reality, but what's the alternative?
After re-reading my initial post and all the comments, I realized I had negelcted to add that for the past week I have been trying a new experiment and so far, so good. I still see Clare each day ... but now not until after dinner ... and I stay until 7 p.m. This change has lifted a ton of stress off of my shoulders ... I'm eating a normal dinner myself at home now (albeit a bit early), I'm not coming home exhausted anymore, I'm sleeping better, etc. So, my ticket out of 'caregiver prison' was cutting back on the amount of daily visit time to 90 minutes or less. As Clare fades more, I will definitely consider doing what some of you suggested and cut back on the number of times I see her each week. But, for now, going to see her daily from around 5:30 or 5:45 to 7 seems to be working very well.
As we all know, this will be different for all of us. There is no right or wrong, just what works best for us individually. We are 5+ years in a nursing home and I still go for a minimum of 3-4 hours every day. Personally, I don't view it as caregiver prison. It is truly the highlight of my day. I absolutely understand how fortunate we are that Lynn can still smile his beautiful smile and express to me things that make him happy. Nothing brings greater joy to my heart than knowing I caused his little world to be just a bit happier for a little while.
I am glad your new schedule is working out better for you acvann!