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LGBT Community and Allies
Losing my cool
Welcome to our world. We're so glad you found us. Yes, you are overwhelmed and need help in figuring out how to relieve your stress. Do call our help line: 1-800-272-3900 and ask to speak with a Care Consultant.
To think about: is your mom safe at home when the health aide is not with her? What is yur lan B?
Hello 1cahija and a very warm welcome to you. I am sorry for what is happening and the challenges you face are indeed significant and that of course is an understatement. Your partner was wise to advise you to seek supportive groups. Being an only child does indeed make things a bit more lonely on this caregiving front, but the upside of it is that you don't have anyone fighting your decisions.
This will be a bit of a long post, apologies for that, but there is much to share with you.
What we do for the short term seems difficult and we often manage to do it; however, it is the long haul that needs addressing for sustainability. That is the key word: sustainability. You not only have a highly stressful job and are working long hours of overtime, but the home situation is also high stressful which probably causes most of the deeper concerns. It is understandable that you are exhausted both physically and mentally. This is a grueling schedule of reponsibilities you are dealing with and you need to find a way to gain some respite for yourself to stay healthy.
Mimi mentioned contacting the Alzheimer's Assn. Helpline at (800) 272-3900. This is good advice. There are no fees for their service. If you do call, please ask to speak to a Care Consultant. Consultants are highly educated Social Workers who specialize in dementia and family dynamics. They can be wonderful support, have a lot of information and also can help to problem solve. The Helpline is open 24/7.
Yes; support groups can be wonderfully helpful. I can imagine trying to find one to attend in person is quite difficult considering your schedule. You are here on the Message Board and that is a very good thing for getting input and experiential wisdom; we are all here in support of one another and that now includes you too. Only thing is; you are on a Forum where there is very little traffic and that means not as much feedback.
You are welcome to post on any Forum on the Message Board. The two that are most traveled are the Caregiver's Forum and the Spousal/Partner Forum. Feel free to post on as many Forums as you wish.
I would not be concerned about the LGBT category; we have had many LGBT folks who openly present themselves on the Caregiver and Spousal/Partner Forums and they have always been welcomed with open arms in a very positive way. I would just like to see you get as much input as possible.
Do you know what your long term plans will be as the dementia advances? We also tell each other to always have a "Plan B," should something abruptly happen. This means that we screen facilities for a "just in case" need that may arise unforeseen. This way we do not have to run about under time constraints and distress.
Living in the past happens because in Alz's, the most recent memory connections become affected first and the older memories leave our Loved Ones (LOs) last. Here is a good link to a good piece of reading; "Understanding the Dementia Experience," by Jennifer Ghent-Fuller. It is a short book on Smashwords, but the author has made arrangements on that site for it to be downloaded. You can print it off if you wish. It is well worth reading. Here is the link:
It does no good to argue or point out error, etc. By this point, our LOs have highly compromised ability to process information, their judgment and reasoning is also compromised and it only lends itself to frustration. It is best to validate their feelings, not their words and then refocus them. I know; sometimes hard to do, but it does help in many instances.
If mother is angry and blaming, "You never do anything right, you can't even cook dinner right . . . " instead of responding to the words, validate the feelings. "Gosh Mom, you are right, I was clumsy and it has upset you; I'll try to do better next time." Or she says . . . "You stole my pocket book and now I can't find it . . " "I borrowed your bag Mother, and I must have put it in the wrong place, I am sorry for making you angry. I will find the bag for you." Then you find the purse and in each instance of validation, refocus the person quickly on something else or getting a treat from the kitchen, etc. At first it feels odd, but we soon learn that biting our tongue and validating brings more results.
Also, therapeutic fiblets are a good tool in the caregiver toolbox. When our LO digs in their heels and refuses to see the doctor, or refuses this or that, we make a fiblet and it goes a long way in kindness in keeping our LOs from major melt downs. This is not a moral lapse, it is a kindness.
NOTE: We also learn that many times when a LO has a change of behavior to the negative side of the ledger, it is because they have developed a "silent" urinary tract infection. These UTIs are called, "silent," because there is no complaint of pain or burning, but there will most often be a significant change in behavior to the very negative side of the ledger until the infection is treated. This can be quite dramatic. Having a good exam from the primary MD with blood work done to rule out any other causes for your mother's changes is also a good idea.
I see that your mother lives alone. Do you think she is reaching a point at which this is no longer effective for her? Could she be feeling anxiety or insecurity as her abilities fade? Hard to tell sometimes, but it may be contributing to her acting out. There are also Adult Daycare Centers as an option for assistance. These differ from one another in what they offer, how they are constructed and what their services encompass. Don't know if that would be an option should a change become necessary; but it is also worth screening for knowledge's sake.
Sometimes our LOs go into Assisted Living and there are some ALFs specifically for residents with dementia. Sometimes the 24 hour care, programs and increased socialization can be helpful.
Just throwing ideas out there. It is good to find the various options as knowledge is power and will enable you to act quickly if anything should change.
I can well imagine how difficult and full your schedule already is; and the suggestions mentioned here take some time to screen. Perhaps little by little, and maybe with the help of your partner, you can find more information.
In the meantime, YOU are important too and your own health is important. Please do be good to yourself, if you become ill that would create more issues. Bits of respite here and there, even if they are short ones of only a few hours can be helpful in assisting us to retain our perspective and being able to put one foot in front of the other.
Sorry this was so long. You are a very loving and caring daughter and a terrific advocate on your mother's behalf. Please do continue to come and talk and let us know how you are doing; we truly do care.
Welcome cahija. You are not alone in being an only child of a PWD (person with dementia). I suggest you read the many threads on the Caregiver board having to do with 24 hour caregivers at home versus one of the many long term care facilities. Do not make a decision yet. Hiring caregivers and being responsible if someone does not show up is a major concern that is always posted about. In your job, you have a lot of overtime and sudden emergencies that keep you away from getting home on schedule.
I don't know what you wanted your mom to snap out of, but whatever it was, it will only get worse. So you need to be prepared now. Many caregivers wait for a crisis. That's not good for all concerned. You do have options. Please read about instrumental activities of daily living and see what your mom can do. This will help you with your care planning options.
From your library ask for any book by Naomi Feola with the word Validationn in the title. It's not an easy read but worth the effort
Hello Journalgirl and a very warm welcome to you. ALZConnected is a very soft place to land and also a place where you will be understood and supported on all of the Forums. We truly do care and support one another.
I am so very sorry for what has happened and can understand the heartbreak you are experiencing on multiple levels. What happened with your partner must be especially difficult; there are not words sufficient . . . . .
One thing I wanted to share right away, is that the Alzheimer's Assn. has a 24 Hour Helpline that can be reached at (800) 272-3900. The Helpline is open 365 days a year. If you decide to contact the Helpline, please ask to be transferred to a Care Consultant. There are no fees for this service. Consultants are highly educated Social Workers who specialilze in dementia, family dynamics and support. They are wonderful listeners;we can express our emotions, and speak freely about anything in our lives; Consultants are terrific in their support, have much information and can also often assist us in our problem solving. It is such a good place to go and vent, to share feelings and to obtain information. The support can really make a difference.
Another thing I wanted to share is that we are all invited to Post on any of the Forums; most of our LGBT Members Post on both the Caregiving and/or Spousal/Partner Forums and are welcomed with open arms. The reason for this is that some of the Forums such as this one are not well attended so there is not much information or feedback. However, the Caregiver and Spousal/Partner Forums are well populated and there is a lot of feedback that is provided for those who Post there. This is very useful and helpful when we are dealing with caregiving as well as personal issues.
The third thing I would mention is that it is a good idea to initiate a Thread of one's own so that one does not get "buried" in someone else's Thread and thereby perhaps not be seen. All you need to do on any Forum to start your own Thread is to go to the top of the page and click on the green button that says, "Add Topic," you then have an independent Thread that is easily seen and you are then good to go. Since the Forums are not "chat rooms," it can take various amounts of time for feedback inputs. I always check back on the day I write a Thread, but also continue to go and look at that Thread daily as not all Members are online here every day, so a few days or even a week can go by before some Members see the Thread and some of them have good input to share.
Whew! That is a lot of information. The most important person is you; so do let us know how you are, and how things are going; as said, we truly do care. We are all here on ALZConnected in support of one another and that now includes you too and we look forward to getting to know you better.