<p>I am so sorry that you are having to deal with this TatinG. It really stinks to have to be between a rock and a hard place and make decisions that your parents are fighting. My dad wanted nothing to do with “help” but it was outside forces that pushed the subject. When they go to the hospital or rehab the social workers often do get involved. I basically told my father that if he wanted to stay in his home he had to accept help. Granted it was a little white lie, but six months later he has become attached to/very fond of his home health aide. I don’t know what state you live in but someone in my family called the state who sent someone out to “check on” my dad which forced things a bit, and I have been able to use this as leverage to get him to cooperate. Now he is in rehab after being hospitalized for more than two weeks and again I will have to talk to the social workers who most likely will push to place him somewhere. And all he keeps saying is that he wants to go home. If you read my earlier posts you will see that my relationship with my dad isn’t exactly warm and fuzzy but even so this has been so very difficult and I feel so very sorry for him. I really think in many ways he is done. He is “weary” as he puts it. I have no idea what lies ahead.</p>
<p>oh, anxiousmommy… I’m sorry… I relate to the relationship not having been warm and fuzzy, but still feeling so bad for him. And I relate to him being done. They are ultimately in control of holding onto their destiny. If they are ready to stop trying, it just doesn’t go well. I kept trying to remember though, that that is what my dad wanted. There came a point where it just wasn’t fair to keep pushing him. Dignity is so tricky at these ages… </p>
<p>and Tatin - maybe something, somehow, something will change to help your dad see that he needs help… something little, something that helps him ‘see the light’ perhaps? I pray it gets better for your all…</p>
<p>On social workers - our hospice social worker had some good talks with my mom, and on one day, mom was in a good enough mood to be willing to look at a assisted living facility. (I hope i didn’t post this already…). We went, she loved it, and she didn’t want to look anywhere else. It all happened so quickly! But she kept forgetting that it was happening quickly, so every day she seemed to get caught off guard. She also seemed to feel like we were leaving the live-in (who mom really thinks of as a friend) in a lurch. When I get frustrated by mom’s memory, I have to try to remember that she really is a very nice lady. :)</p>
<p>So I woke this AM, worried about everything, including moving her stuff in a snowstorm, and she was sad and thought we didn’t have to do it this soon. She keeps forgetting the double-paying for the room as well as the live-in. I felt a bit like Tatin -stuck. Was I really moving her too fast? Or was it good to get her into a new environment, where she was claiming that she wanted to go anyway? If she’d stayed home another week, would she just have sat around doing nothing, as she had previously been doing? SHE thinks she would’ve gone through stuff in the house with the live-in and packed together. I KNOW she would’ve sat around reading and LITERALLY eating bon-bons (the Dove kind!) </p>
<p>So we just did it. We moved the stuff, and now that she sees it in her new room/s (it’s a one bedroom, not a a studio) she’s feeling better. It feels like her home. I even took pretty pics of the snow outside her window. So she is feeling better and I am in theory feeling better. Still torn up inside with all sorts of feelings, as well as sensing that the people in the place are somehow older and worse off than she is, which leads to second guessing myself. I have to make all the decisions based with the knowledge on hand, I choose what I think is best, try to involve mom as much as she can be involved (again, a tricky proposition), try to take into account what she would have wanted if she was 100%, try to take into account my parents personal view on money (they are spenders, I’m frugal), etc… I’m fading… Gotta start over tomorrow with moving clothes, and deciding what else can and cannot go… Caregiver burnout… it’s real, as we all know.</p>
<p>my3gr8boyz- Best to you. How well many of us know that particular version of exhaustion and second guessing. Wishing you rest and peace. It seems like a lot, especially during this season. </p>
<p>Sometimes it takes awhile to know just how perfectly timed a move is and I always take comfort in avoiding a crisis situation with the optimal place having no empty beds. We moved my parents to assisted living and within a month, discovered that one of them had a serious illness. I consider getting them located near my family at that time my winning the lottery moment. It made all the difference. </p>
<p>Your description of the day is most encouraging. Hang in there.</p>
<p>Thankyou travelnut. 
I’m really hoping this is a lottery moment! </p>
<p>and LasMa - I’ve been meaning to thank you for all your wonderful posts to me and everyone here. You hit the nail on the head with the lulls vs crisis times. I’m hoping to head into a relative lull soon, and have to learn that its OK. I don’t have to be “on” all the time.</p>
<p>Hi all, I am new to the thread and in need of advice. Both my parent’s seem to be in the early stages of dementia with my Dad officially diagnosed. They live in FL and have been planning, before the housing crash, to move here. Then the housing crash happened and they felt “stuck” though were in no hurry to move. But, their cognitive capabilities are leaving fast and fortunately, I think the house will sell (not at it’s former worth but that’s OK). </p>
<p>They want to move to a lovely retirement community where they can walk around the neighborhood and to the grocery store. My concern is that they are starting to get confused where things are in their house, especially if the environment has changed. For example, cabinet doors under the sink were open and the couldn’t find the trash can located next to the sink where it had been for 20 years. When they move, I expect some confusion. Should they move to such a place with the risk of them getting lost in this large community? I wasn’t worried until someone said, “how can you move them to there when they will be wandering around?”</p>
<p>I hate to say this, but, if they are confused in their home now, a retirement community may not be the best match. Is there an assisted living section in the proposed community? How close will they be to you? Are they taking any medications as prescribed? Will you be able to be their healthcare and financial advocate? Take a deep breath and go and visit them in their surroundings to help you make the most appropriate placement decisions for them. This forum has so many helpful and caring posters with great suggestions based on their experiences.</p>
<p>Hi, I have an 89-year-old dad with relatively few issues (although he has had a few orthopedic surgeries in the past couple of years and his memory isn’t what it used to be) and a 91-year-old stepmother who is well down the road of dementia. My dad was very resistant to getting help in the house. It took a long time, like a year, before he realized that he just couldn’t do it alone. He had to call 911 several times when my stepmother fell and he couldn’t get her up. But first he agreed to aides 2 days a week, then 3, and now we are up to 4 days a week. For now, I think that’s enough, although I know to be safe they really need live-in help.</p>
<p>Similarly, before his most recent surgery on his vertebrae, he resisted using a walker until one day, he said, I started using the walker and it really helps. Then the same with sleeping in the recliner to reduce the pain in his back, and most recently with using a cane–he is in much better shape after his surgery but his balance is not good, and the cane is much easier to use, getting in and out of the car and food shopping, which is his main outlet in life.</p>
<p>It’s a lot like having a teenager–never say I told you so, never try to take credit, even though, of course, you ARE the brilliant one who thought of whatever it is. Maybe just give him a little time to get used to whatever idea it is. But it’s always two steps forward and, if we’re lucky, only one step back.</p>
<p>Actually his surgery made it easier for him to accept the aide. We hired a live-in aide when he went into the hospital. She was there for a week, and he came home after 4 days. He really liked her, could see that she took the burden off him to watch my stepmother who can be very difficult under the best of circumstances. He didn’t have to worry about killing himself trying to bathe her, or going up and down the steps to do the laundry. And when we got aides during the day, I made it clear to him that if there was anyone he didn’t like, we could get her replace (since they came from an agency), and if there was anything he wanted the aide to do, I could tell the agency and her supervisor would convey the message.</p>
<p>But yes, it’s hard, very hard. My sympathy and empathy.</p>
<p>Hi Ecmother, thanks for the response. </p>
<p>Is there an assisted living section in the proposed community? Yes, there is an assisted living section in the community with home health available as well. The problem with the assisted living is that they are relatively young at 77 and 78 and physically very healthy. They currently are well groomed and require no physical assistance. One of their joys now is their 2 mile daily walk. I have visited specific assisted living situations and they are so much more able then the other residences. </p>
<p>How close will they be to you? I’ve picked out 2 communities for them, both continuing care and within 30 minutes of my house. I told them they cannot go to one they were looking at which is an hour away. </p>
<p>Are they taking any medications as prescribed? Yes, and they are currently able to manage those but who knows when they move? </p>
<p>Will you be able to be their healthcare and financial advocate? Yes, I do have documents giving my brother and myself POA. I work in the healthcare field and will be able to help them navigate the health system. I am working on getting in the loop more for financial decisions. My father is an engineer and naval pilot and bristles a bit on allowing me access, but I am working on that by telling him I will be managing the finances “if something happens” to them. </p>
<p>I fear that by moving them, the dementia is going to get worse, but I can no longer leave them in FL where I can’t keep an eye on them. But, what do I do when they really only need memory care? Someone to help orient them to time and place?</p>
<p>Elder care has become very specialized as we all live longer. It sounds like you have done a lot of research to what is available near you. Some retirement villages have memory care available such as a social worker who checks in on meds, and does a real quick assessment. The move may be a perfect time for you to become more aquainted with the finances, using the excuse as assisting them to navigate a new bank, utility or phone company. May I suggest looking for a well recommended geriatric MD or neurologist to get a basline evaluation? This might help in the future to distinguish between confusion caused by the move versus a change in dementia or mental status from a UTI, electrolyte imbalance, etc. They’re lucky to have you as an advocate.</p>
<p>We are fortunate to live near 2 medical centers (Duke and UNC) that can get a baseline assessment. I think Duke has a particular elder care clinic where they will do an initial assessment and make recommendations. Finding a geriatrician may be a challenge. I would like to refer to the elder care clinic and then find a good Geriatric NP for routine care. After or before the move, I will make an appointment with a financial adviser (fee for service) and insist on attending (Dad did reluctantly agree) so I can help them carry out plans. My Dad did show me tax returns over Christmas. I’m just having trouble finding memory care that isn’t in an assisted living environment. Thanks for allowing me to talk about my challenges. It really does help.</p>
<p>GTalum: You are really on top of this. Memory care means different things in different places. Also, people with memory issues vary greatly in rate of onset and precise nature of how symptoms impact daily living. Your parents’ strengths will serve them well in the transition. Your question about their needs being memory care is a good one. It has been my experience that routine and some structure in daily activities is quite helpful to those with memory loss. My folks were the youngest in their assisted living for awhile; the staff was excellent at focussing on each resident’s needs and the socializing was not impacted much by the fact that peers were all navigating different issues. Everyone was coping with some aspect of aging and there was a lot of humor and acceptance.</p>
<p>It seems likely that the right setting will optimize their independence and everyone’s peace of mind. Many facilities have a campus like atmosphere for walks, yet there are people around if needed. My parents moved to an elder care facility with multiple care levels and the possibility of movement over time, including brief stays for extra care post op, for example. It has been a blessing and in the last 9 years, all levels of care have been accessed without a new search. I think it has been as smooth as possible and very effective in providing continuity for me as a family member, as well as for my parents.
Best to your family.</p>
<p>GTalum - You seem to have a really good handle on the situation. The memory care is a tough thing, especially with both your parents being so young and physically able, as well as your dad having been an engineer (don’t know about mom!). It seems the engineering types don’t want to admit that their usual sharpness is slipping. The neuropsych eval is a great idea, as it might give info to your parents as well which will make them really understand what is/will be happening to them. My parents only lived 15 minutes from me and I didn’t realize how dementia had been “getting at” my dad. He fought it and thought he could just try harder or make more lists or something… So the fact that you are noticing this now and are thinking ahead to getting them near you is so great! (not that I am actually helping much, but I wanted you to know you are doing the right thing!) I’m glad your dad is letting you in a little bit. That is a great start. </p>
<p>My mom is moving to an assisted living facility this week, and even at 84 (years older than your parents) I worry a bit that she seems more able-bodied than many of the residents. I’m constantly worried that I’m not doing the right thing, but she can’t live alone anymore and her confusion just overwhelms her. Anyway, this place is a great place for caring advice or just caring hugs!!!</p>
<p>PS My son will be attending college next year in your neck of the woods!! He’s very excited!</p>
<p>Thanks for the kind words of support travelnut, ECmother, my3gr. I think I will let them go through the process to apply for their first choice place to live. If the testing shows they probably cannot manage the community (although continuing care, not isolated from the rest of the multi-purpose neighborhood of homes, restaurants, and shopping), I’m sure they will not be admitted and then on to plan B. </p>
<p>Yes, being an engineer, my father never considered having Alzheimers, despite the fact that his mother had it at an early age and it is what eventually killed her. The one advantage of him being officially diagnosed is that it provided motivation for them go through with plans to move here.</p>
<p>GTalum: access to a good medical center is a blessing. My mom sees a geriatric specialist who supervises her care. All her other doctors are affiliated with the same medical center which makes sharing information between them a breeze, since their electronic medical records system is top of the line. It’s very easy for me to mention at a visit that Dr. X did a test, or changed a med and the other doctor can look that up right away. Before we moved here, we had a horrible experience when my mom had her stroke & got caught up with facilities not sharing medical info with her regular doctors in a timely fashion.</p>
<p>If you can set things up so you have online access to her medical account as well, it makes things easier for you.</p>
<p>Gtalum - I did not realize that your dad has already been officially diagnosed with Alzheimer’s… How about your mom? and the first choice place you mentioned, is that the one that is an hour from you?</p>
<p>I moved a few things over to the assisted living facility today and it seemed extremely quiet. No one was out anywhere. Well, it turns out there is a stomach bug going around and in an attempt to stop it, everyone is staying in their rooms today and possibly tomorrow. All meals are being brought up, and new admits could not be admitted today. Well, I never got a call about it, so it’s good we had loosened the plan to have mom in there by now. She was supposed to go in on Sunday, and I told them she wasn’t quite ready. So I guess our name fell off the list. Not a comforting feeling. And the huge picture (VERY special to my mom) that we hauled over there now apparently can’t be hung because the studs are metal and not wood?? Again, it is feeling like now that they have our $, they no longer need to be really nice… although they DID seem to hurry to get the room ready and then we didn’t actually move her in yet… I get torn between not wanting to be a pain in the butt, and also wanting to do what is best for mom/dad. I say dad because this happened in rehab all the time. I constantly felt like a squeaky wheel (?? is that the saying?) and I wanted good care for him, but did not want everyone thinking, “Oh no, here she comes again!”</p>
<p>my3gr: Don’t worry about being a pain. The staff wants to know your needs and if you or your mom say nothing, they won’t be able to help with what is important to YOU. They are getting to know you just as you are getting to know them.</p>
<p>You will be there a lot in the beginning and find that you relate better to some staff members than others. Use them to help your mom adjust to her new place and routine. People truly want to please. When my dad had his short stint in the Alzheimers unit, I found that the staff relied on our telling them his needs as they had just met him and they really had no idea what was important to him.</p>
<p>I think you will find that they will not say, “oh, no, here she is again”, but instead think, “thank goodness, she is here now and can help us get her mom what she needs”.</p>
<p>RobD: Unfortunately Duke is a bit late to the digital age and is not great at sharing information. They are working on it and making rapid progress. I saw a shoulder guy a few years back and they did not even have in their records that I had my hip replaced by someone in their department at Duke University!</p>
<p>My3gr8, yes, my Dad is officially diagnosed and is on Aricept but not my Mom. She was evaluated and told “normal aging” but her memory and confusion is not much different from my Dad’s, partly because she is so used to taking his lead. But, if they got lost, he would absolutely not listen to her if she suggested the correct way to go. I suppose he could learn. Socialization at a retirement center would do her a lot of good. 1st choice place is 1/2 hour away. I put my foot down and told them that I cannot have them farther away than that. </p>
<p>You do have to be the squeaky wheel! Your parents are like your children, if you don’t advocate for them, nobody will. Just remember, they need you to make sure they are treated with respect and dignity. Keep it up, though it is hard to keep so many balls in the air.</p>
<p>Had a meeting with the team at the rehab center yesterday. I was told that in their opinion my dad now needs 24/7 home care or a nursing home. He is on that road and who knows how long the journey will be. The term “failure to thrive” was mentioned and after researching it online realize it fits my dad to a T. I am like a deer in the headlights. I know he wants to go home. We have a doctors appointment tomorrow to check on the pneumonia and after that we will still have at least two more weeks of rehab. I still cannot believe how much has changed in six months.</p>