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Medical Forum / Diseases and Disorders / Alzheimer's / March 2004New events
Hi Everybody, We are finally moving onto the next phase of this journey which entails placing Ida in a nursing home..... something I have talked about here, but not done anything about till now. The instances of fecal incontinence accidents are becoming more frequent. She apparently had another one yesterday at daycare since she came home with different clothing than she went there with. I did always say that this was my stopping place, my limit, and I am still sticking with that. It is definitely time we got our lives back on track again. We spoke to our lawyer yesterday and he is asking us to apply for Medicaid for Ida now. We are also applying to a couple of nursing homes. Most particularly we are applying to the best one in hopes they will be able to take her. It is our county nursing home and they have one of the highest ratings in the whole state. They are picky about who they take. We'd appreciate your prayers that they can take Ida, because I am sure it is the best place for her. It is minutes away from our house so we can visit her regularly, and I have friends whose relatives are there, and they speak so highly of the standard of care. I have a ton of mixed emotions about this, as I am sure many of you can relate to. Remember, I have cared for this lady like she was our baby, supervised every aspect of her life for the last three years, worried about her, cooked for her, helped her bathe and to dress. Our schedules and our lives have been arranged around her care. So I am awaiting the upcoming events with both anticipation and sadness. We waited a little longer than we were going to, because it seemed right to do so. Now I have come to the realization that it is absolutely time to do this. She is still in pretty good general health, but her mind has reached a stage where it is honestly just too hard to look after her at home. Part of me feels like I am giving up, but I also realize that it is time for me to pay attention to my own health needs and my own life. I haven't been going for tests I need or done anything for my own life in so long I think I may have to decompress for a while. Everybody says that caregivers all tend to do that, and I have proven to be no exception even though I didn't think I would be.  SignatureEvelyn (To reply to me personally, remove sox) > Hi Everybody, > [quoted text clipped - 39 lines] > Everybody says that caregivers all tend to do that, and I have proven to be > no exception even though I didn't think I would be. From what I see here, just about everyone cares for their LOs at home beyond the point where any rational person would, and at the expense of their own health, emotional or physical. I'm amazed how long you've hung in there, good luck finding the right home. FWIW things are so much better between my mum and dad now he's being cared for 24x7 and she doesnt have the constant stress. SignatureTumbleweed Remove my socks for email address Evelyn, my prayers for you in this situation. You have certainly been good to Ida and should not feel at all guilty or sad for putting her in a nursing home now. You must begin to look after your own health. Will pray about the NH you want which is so convenient for you. Gwen Signature----------------------------------------------------------- "If you're going through hell, keep going." Winston Churchill | Hi Everybody, | [quoted text clipped - 39 lines] | Everybody says that caregivers all tend to do that, and I have proven to be | no exception even though I didn't think I would be. [...] >We waited a little longer than we were going to, because it seemed right to >do so. Now I have come to the realization that it is absolutely time to do >this. She is still in pretty good general health, but her mind has reached >a stage where it is honestly just too hard to look after her at home. She will probably adjust more easily than you will to the change. My mother didn't want to leave the nursing home after she'd been there for a few weeks - she thought of it as home. Unfortunately, the standard of care there wasn't what we'd have liked; we did much better with her at home, but her situation was different because she was frail and non-ambulatory. One of the good things about the nursing home was that unsteady patients had big rolling chair things (somebody must know what they're called) and were kept safe that way while still able to walk around. Also, they had aides to take people into the showers every day, plus physical and occupational therapy and more. >Part of me feels like I am giving up, but I also realize that it is time for >me to pay attention to my own health needs and my own life. I haven't been >going for tests I need or done anything for my own life in so long I think I >may have to decompress for a while. There's absolutely no use to sacrifice your own health to this awful disease. I hurt my back so badly over the past few months that the front of my left leg went numb - I had to stay home on drugs (muscle relaxers and pain killers) for several days after that! And I wasn't even going to my parents' house every day, just every other day or so. Luckily for me, my back (probably a bulging disc?) must be healing now because little by little my leg is getting sensation back. On top of that, I gained weight from letting go of my exercise routine. I had a nice long hike with my dogs this morning and it sure feels good. >Everybody says that caregivers all tend to do that, and I have proven to be >no exception even though I didn't think I would be. You're smart to have had a limit. Of course, you might be lonely in the shower by yourself! ;-) ~Des > Hi Everybody, > [quoted text clipped - 3 lines] > but not done anything about till now. >snip< =================================== Well...it's about time. You may want to discuss the Medicaid issue with the NH Administrator. They can probably offer some useful advice to simplify the situation. Rosie had to be admitted to the NH by a Dr. so you may want to check on that also. When we first discussed the issue with the NH it seemed like it may be a long wait but after the Dr. got involved he just ordered her to be admitted and that was it. SignatureJohn Inzer return e-mail disabled Hi, Piano Man. Haven't heard from you about Rosie in quite a while. Have there been any changes with her? Gwen Signature----------------------------------------------------------- "If you're going through hell, keep going." Winston Churchill | > Hi Everybody, | > [quoted text clipped - 16 lines] | involved he just ordered her to be admitted and | that was it. > Hi, Piano Man. Haven't heard from you about Rosie in > quite a while. Have there been any changes with her? > Gwen ======================================== Hi Gwen, Rosie is going downhill as expected but the progress seems slower than what I have seen reported by others. It has been 5 years since official diagnosis but we feel that she was affected long before that. At this point...she is still physically healthy, especially for someone who will be 86 in June. Her current mental state is that she no longer talks very much...though she will answer a question. She doesn't seem to know when she has to use the toilet and sometimes she forgets to swallow (food, meds, etc). Also...she needs to be coaxed into eating. Otherwise... she will eat one or two bites and leave the table. What a way to have to exist... SignatureJohn Inzer return e-mail disabled > > Hi, Piano Man. Haven't heard from you about Rosie in > > quite a while. Have there been any changes with her? [quoted text clipped - 19 lines] > > What a way to have to exist... Indeed, the last stage is pretty heart-wrenching. Thanks for the update on Rosie. One of the reasons I still read this NG somewhat regularly is to follow up on the people I grew to know so well here when I first joined the group in around '99, about 2 yrs. into my mom's diagnosis. Like you, I'm sure she had shown signs long before, as far back as '91. Nice to hear from another "oldtimer"! > Indeed, the last stage is pretty heart-wrenching. > Thanks for the update on Rosie. One of the reasons [quoted text clipped - 4 lines] > signs long before, as far back as '91. Nice to hear > from another "oldtimer"! ===================================== Hi Lynn, Yes...for quite some time we thought Rosie was having a problem with prescription drugs. We discussed it with her Drs. on many occasions. She would hallucinate (snakes, children in the closet, etc.) She even clipped the cords on her appliances with scissors because she thought they were snakes. (it's a miracle that she was not electrocuted). And she would accuse everyone of stealing from her...on and on. I'm sure that you had the same or similar experiences. As I've said before... What a way to have to exist... SignatureJohn Inzer return e-mail disabled John, you're correct. It is just existing, not living. And it is such a shame; hope it will be different some day. Gwen Signature----------------------------------------------------------- "If you're going through hell, keep going." Winston Churchill | > Indeed, the last stage is pretty heart-wrenching. | > Thanks for the update on Rosie. One of the reasons [quoted text clipped - 21 lines] | experiences. As I've said before... | What a way to have to exist... > John, you're correct. It is just existing, not living. > And it is such a shame; hope it will be different some > day. > Gwen ===================================== Absolutely Gwen...it is not living. Maybe at some point in the future a cure will be discovered. SignatureJohn Inzer return e-mail disabled > Hi Everybody, > > We are finally moving onto the next phase of this journey which entails > placing Ida in a nursing home..... something I have talked about here, but > not done anything about till now. > They are picky about who they take. We'd > appreciate your prayers that they can take Ida, because I am sure it is the > best place for her. Evelyn, you,Peter and Ida are added to my prayers. Like you, I had applied to the NH in our area with the best reputation- and was pleasantly suprised that I got a call from them about 1 mth. after the application. In subsequent years, my clients who are social workers would ask "How did you get her in there?" So don't feel that it's too tough, there is a lot of hope. When I applied, in addition to the formal application, I wrote a heartfelt letter about the care mom had recieved prior, and how I was looking for a place that would provide loving care for her now. I also went on to state that I was looking for a place close to home so we could visit often. I can't help but feel that that personal letter helped, the staff knew from what I had written that I wasn't just looking for a place to "leave her". (BTW,a the NH where my mom was, I was told there wasn't a true "waiting list" as much as a priority in care needs- the 1st prioity for any openings was given to those coming from a hospital; the 2nd priority was given to those transferring from another NH -or ass't living- and last priority was given to those coming from home.- don't know if that's how they all work, but it would seem to be a good thing to get her application in well in advance of actually needing to make that move- and the input from her doc, as mentioned before, seems to be a excellent idea) > It is minutes away from our house so we can visit her regularly, and I have > friends whose relatives are there, and they speak so highly of the standard [quoted text clipped - 6 lines] > lives have been arranged around her care. So I am awaiting the upcoming > events with both anticipation and sadness. The sadness you feel is to be expected...this is your "baby", remember? But know that in no way are you abdicating responsibility for her. Your caregiver duties will continue- it's just that you will allow someone else to physically take care of her. You will still be there at the NH as her patient representative. You will be reviewing her chart regularly, attend care conferences every 3 mths or so, you will be the one to speak with her M.D., nurses, and aides about how to best care for Ida. It will be you and Peter that will help the staff get to know who Ida was before this disease took over so much of her core of being. And it will be you two who are there by her side at the NH, participating in activities with her, and continuing to do some of the little things for her that staff may not always have time for. But you get to do all this with a good night's sleep, and some time to take care of yourselves, as well- all so important when it comes to managing the very long-term stress this illness imposes on all who struggle to care for their LO's. > We waited a little longer than we were going to, because it seemed right to > do so. Now I have come to the realization that it is absolutely time to do [quoted text clipped - 8 lines] > Everybody says that caregivers all tend to do that, and I have proven to be > no exception even though I didn't think I would be. No, you are in no way giving up. Let go of that idea right now...it's important to remind yourself this is just another step on the journey you've been on. You have been enormously kind and giving to Ida-no one would expect you to do anymore than you have. When the time comes that you move her, do so knowing full well what a fine effort you've put forth. Kindest regrds from Lynn |
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