I relocated my mom from out of state and she has been living on her own only 5 minutes from my home. In March I took on a new job and relocated 2 hours away and when I visit mom, I am finding she isn't driving anymore, no motivation, forgetting if she took meds, not socializing, depressed, not eating. So my husband and I are going to bring my Mom to live with us. My sisters live out of state, so no support from them, just criticism. Just having her visit over the holidays has been an eyeopener of things to come, its been like a rollercoaster, she has up and down days. Today she hates me and wants to go home...I ruined her life! Yesterday, she was planning the color to paint her bedroom walls.
My new home which was our sanctuary, even though she's not a horrible person to live with. It's just so hard having another adult in your home and especially one that is hard of hearing in both ears so the volume on the TV is always set to 54! I am seeing that a lot of our privacy is gone and we never have a moment to ourselves anymore. Unfortunately, I don't have any other solutions for her care... Am I taking on more than I can handle? New job, new home, my own health is suffering... anxiety, guilt, hair thinning, weight gain... STRESS. Thanks for hearing my vent...
But for now, if you want to attempt to care for your mother in your home, here are some suggestions:
1) Learn all you can about dementia, and if you know it, about the specific kind of dementia she has. Knowing what to expect doesn't make the symptoms pleasant but removing the element of surprise helps some. And it definitely helps you not take them personally.
2) Realize that change can be hard on those with dementia. If Mom has to make another change in her living arrangements, that may set her back some. Expect this. Give her plenty of time to settle in and regain a sense of calm.
3) About sisters who criticize: blow 'em off. Try, "You may be right, Sis. Would you like Mom to come live with you for a month, so you can try out these theories and let me know what works best?" and then "Sorry, I'm only listening to constructive ideas this week," and then, "I think we'd all get along better if we talk about other things instead of Mom." Set boundaries with your sisters and ENFORCE them.
4) About the loud tv: OMG, dementia or not, married 30 years or not, I would simply have wound up divorced or in a mental ward if it weren't for that wonderful invention wireless earphones. And the gods bless closed captions when we watched something together, so he could follow without the volume damaging my eardrums. Mom won't wear earphones? Sorry, she wouldn't live in my house unless she agree to that.
5) No individual or couple can be 24/7/265 caregivers, especially to someone with dementia, and retain their sanity. Can't be done. So before she even moves in, make plans for regular respite care. Have a Granny Sitter come in one night a week. Make plans for someone else to be with her so you can get away one weekend a month. Take longer vacations once or twice a year. These are ESSENTIAL. Figure out how you can do that before you invite your mom to live with you.
6) Mom may be able to be alone during your work hours now. Plan ahead for when that is no longer true. Investigate adult day programs in your area. Often they pick up the participants and return them home, providing a hot lunch and possibly even breakfast.
7) Look at your finances carefully. You have your own old age to plan for. To the extent that she can, Mom should be paying her own way, and that includes paying you enough to arrange for the respite care. If mom has no resources to even pay her own way, start the process of applying for Medicaid. That can help with in-home needs such as the adult day program.
I cared for my husband through all stages of dementia, for nine-and-a-half years, and he died holding my hand in our bedroom. It can be done. BUT the spouse relationship is very different than the parent/child relationship, and my husband had relatively mild versions of all stages. If you do this, don't necessarily expect you'll continue to do it through all stages. And if you try it and it is a total disaster, have the grace and courage to try something different, for you mother's sake as well as for your own.
jeannegibbs- am I embarrassed to say- I didn't know of the different stages... at first primary care dr wrote it off as Short term memory loss due to age. She has been taking Airicept and Namenda for a year now, I don’t see any improvement. Do I take her to a specialist? Which one?
You offered some great advice. It was my first post here, I have just been stalking.. :) I appreciate the support and words of wisdom.
As far as the headphones- do you have any suggestions on product names? I will give it a try.
Very few internists or GPs have a clue about how to deal with dementia. Geriatricians have more experience and they make the best primary care doctors for the elderly (with or without dementia). My husband's wonderful geriatrician handled his day-to-day health needs but was also very knowledgeable about his type of dementia. A behavioral neurologist treated his dementia, and kept the PCP up-to-date on drug changes, etc. She was very conscientious about drug interactions. The combination of a geriatrician and a behavioral neurologist worked very well for us. Another specialist who deals with dementia is a geriatric psychiatrist.
Good luck to you!
PS -- The thing about drugs like Airicept and Namenda is that it is hard to know if they are working because you don't know whether your loved one would be worse now without them. Did they help slow down the progression? Hard to say.
dementia. I know my husband is tired, too. We were always on the go and ride
motorcycles and out and about doing things, but he stays right by my side. I even, through depression or trying to satisfy myself, got myself in trouble with credit cards and had to have credit counseling. At the time, I guess I was satisfying myself by shopping, and then you think, why did I buy that?? Christmas was NOT festive. Mom thought it was my husband's birthday and she was opening presents when he was! The decorations or Christmas shows on TV never even phased her. I am sooooo scared for my health right now. I need exercise and weight control because I am too short for my weight and there is just NO way to get it. We have no family, except a daughter and she is a Physician Assistant and a newlywed and soooo busy getting her career established. Every now and then on a day off, she gets me out of the house to go eat or shop (in my case look) or she will buy me something to make me feel better. But, my husband is home with my Mom and it is a constant "have you heard from her", "where did she go", "when is she coming home" and that means I can't be gone for any length of time, or he will be going "bonkers", too!
Yes, you have taken on a heavy load, but you will be able to handle it, because it is your Mother. And, it may sound bad, but my daughter assures me it is NOT, to take an anxiety medicine. I believe it has saved what sanity I have left. Mom's doctor knew what I was experiencing so he gave me a prescription for Prozac. It's not a cure, but it does take the edge off, when the going gets tough. Oh, and Mom is completely DEAF. She even has the best hearing aids ever because she was so deaf and we still repeat constantly. Mostly, no conversation at all, because she doesn't understand or comprehend anything. My best wishes to you and when you need to vent, I am there to listen. Take care of yourself, because as a caregiver, we always come in last, but I am praying that we will survive.
Take care and a very Happy New Year to you!
Then try to simplify the duties you will be taking on( the bills, the pills, the bathing, the feeding, the mobility concerns etc.) If you don't have a POA you need to get one to handle her finanical issues. If you can do the pills mail order, it saves you wasted time going to the pharmacy for example. If you can get a primary doctor who comes to the house, you will not be taking off time from your job to sit in doctor waiting rooms as each medical condition occurs.
Even though your sisters live out of state, see if they can help some way. Perhaps they can send a check to you to underwrite some of the extra costs
you will face caring for your mother. Perhaps they pay for her hairdos, transportation costs to the adult day care. They still have a bargain with you stepping up to care for mom. What's the worse they can say--no--you are no worse off then you are now.:)
I would ask the doctor what therapy might help your mother want to socialize again. I think social interaction for the elderly is important whether they have or don't have dementia. My father loved a digital picture frame with important people from his present and past on the device. He loved to watch it in the morning as he ate his breakfast. Seeing his parents each day, brightened his mood and he would remember some new "stories" about his parents which he would share with me.
Hang in there. I know the pressures of a new job and especially in this crazy economy keeping the job is important. Check out family leave laws so you know how to use them if you must. 2 states have paid family leave (CA and NJ). But the unpaid national family leave at least secures your job.
Happy new year.
Elizabeth
we are a month in with our new living situation wit my FIL living with us, and i am beginning to see how important boundaries are when a new person comes to live in your home. tv ear phones are a must! alone time is hard to find though, and i agree that it is vital that we caregivers get alone time as a couple, or family unit of mom, dad, kids. i have noticed that we all relate to each completely differently when FIL is with us, because he changes the energy dynamic of our family, and so i have also insisted that we will start having time alone just as a family in the new year.
good luck, flutter. are there any groups or organisations your mom can join in with every now and then where you live? eg, we have a group here that arranges day trips into the mountains, or to an alpine lake for over 70's plus who are still mobile, and various other activities based on interests and capabilities.
loved the idea of the digital picture frame, elizabeth! will definitely try that out this week!
re losing your sanctuary, flutter - i hear you completely. i have just made a little alcove upstairs in the attic room into a sanctuary of sorts for the kids and i, where we can all escape for a few mins to breathe. he can't get up there, so it is calm and peaceful. is there a little space you can claim as just yours, and turn it into your own private space?
good luck, and hang in there. this forum is amazing, and the response from everyone is an absolute sanity saver. i read the posts of others and can relate to their situation, and then read the various answers and find them so very helpful.
lots of love to you all and happy new year!
I suggest you contact the department of Aging, and also speak to the local Alzheimer's Assoc. and get some free help and advice from them. We did, and it was a big help.
Whether you believe in God or not, I suggest you pray to him to give you the peace you need inside your mind, body, and soul to help deal with this intense pressure from a new job and moving your mom into your home.
In my case, I am self employed, and taking care of my mom is just ruining my business I spent 9 years building, and moved it 1300 miles to be near her to take care of her. I wasnt as lucky to get her to move near me, as she refused when she was in good enough shape that no one could tell her what to do, but we saw the train coming off the rails, and spent 10's of thousands of dollars moving our home and all my equipment half way across the country.
I only wish I could have gotten her to move in with us, as we spent most of our saving on the move, and now my business suffers greatly. Sorry to cry about my situation, but all I can say is your situation could be worse, as could all our situations, so we need to pray for help from the Lord and ask for patience each day to deal with what new things are ahead. Thank God my wife has been willing and able to be apart of the solution and not another problem in the big picture.
Use the local resources like Department of Aging and the Alzheimer's Assoc.
They can provide a list of care givers in the area, and help with suggestions based on your situation. I am sure there are others who can help, and they can probably send you there way.
Good luck and hang in there. Remember this, as I was taught this by someone else who deals with dimentia and alzhemiers daily. Its better to live in there REALITY when you can, and just go along with what they say and do when you can. I know it sounds like lieing, but its just better for them if they think they are back in High school and are talking about the spring dance that you just go along with it, rather than try to convince them that they are talking nonsense and try to bring them back to 2012. I know your mom is not that bad yet, but I am really just trying to make a point that its better to go along with what they say when it doesnt hurt anyone or anything. We call it "living in their reality" and find it is just better than arguing about what day or year it is at times.
regards, and God Bless you and your family and give you the strength that you need to deal with this aging parent.
God Bless........
i think its a great idea, and i have a spare digital photo player, so am going to get the kids to make him a slide show up.
will keep you posted on how it works!
I suggest you find a good doctor for your mom to help with the correct regiment of meds. The right meds helped my mom......she will never get better of coarse, but at least they help in the over all picture, and we laugh alot, as I kid with her all the time, and she kids back pretty good..........
we were taking her to my sisters house for a visit and i had to stop for gas, so I looked at my mom and said, "you need anything from the gas station, and she said no. Then I said, dont you want me to get you cigarettes (she doesnt smoke and quit 30 years ago thank God) while I am in there," and her response was , "No, get me Cigars" and me and my wife started laughing, and so did she.....
My point is, I try to make jokes like that, even if they are corny, all the time and make her laugh as much as possible. the latest joke in the house is I tell her I want a Helicopter, and that my wife says no way! We get my mom in on the conversation about it and just laugh and make up silly stuff about what we would do with the helicopter and where we would go if we had it.......its better than silence or the TV blasting cause she cant hear..............anyway, just wanted to mention that.
p.s. I really do want a helicopter, but my wife thinks i am kidding. I cant ride dirt bikes any more cause of all the rods and screws in my back, and I figure an experimental type one seat helicopter is like a dirt bike you fly 50 feet off the ground. I am trying to find something cheap that I can rebuild or repair, as I cannot afford the real deal that is fancy......I hope before my mom is gone she can look out the window into the field one day and see me hover off the ground with my junky flying machine and remember all those days we kidded about me owning one while my wife said NO way Jack!
We live in a smaller community and utilized our local resources. We were guided by my Mom's primary care physician. Mom, first had a CT of the head with and without contrast. Then, she had neuropsych testing by a local psychologist. Then, we were referred to a neurologist. Mom was found to have Lowey Body Dementia(LBD) and a series of mini strokes. She was started on Galatamine, which almost eliminated the spatial disorientation, delusions and hallucinations.
I would encourage you to seek help in diagnosing your Mom's condition. I would also recommend researching dementia on the internet. Just knowing "what I was dealing with" gave me peace, courage and strength.
His symptoms were very mild for about 5 years. His behavior remained mild -- no outbursts, agresssion, etc right to the end, but he became more confused and I felt it was not safe to leave him alone for more than 20 minutes to go to the drug store. The first help I had was sending him to an adult day health program. A van picked him up and brought him home. He went 9 to 3 two or three days a week. I made all my appointments for those days. When he became too confused for that program he stayed home and we got a personal care assistant 32 hours a week. Glorious! She got him up, shaved, teeth brushed, dressed, and made him breakfast. She did puzzles with him, watched tv with him, went for walks (he on his mobility scooter), helped him bathe, at the beginning went on outing with him, and did laundry while he slept. I worked fulltime from home, and this was a real blessing for me.
I laughed at "forget the hurry part" -- yup, "hurry" "fast" and "quickly" went completely out of my husband's vocabulary. He couldn't think fast, he couldn't walk fast, he couldn't act fast. We both learned to make allowances for that.
I found what worked well for viewing entertainment was DVDs of old television shows he used to like. With no commercials to interrupt, familiar characters, and a familar plot convention, he could usually enjoy these. We watched the entire series of Sherlock Homes together, also Columbo, some Mash, Murder She Wrote, etc.
He was on a number of drugs and for him they were very effective at managing the symptoms and improving his (and my) quality of life.
Good luck to both of you, mlface.
- You cannot do this alone. If your budget allows, hire a caregiver who can take care of your mother for part of every week. (Your sibIings should be expected to contribute financially since they cannot be there to help you with your mother's care.) When hiring, it's advisable to get trustworthy personal referrals from friends, nursing homes, etc. since this person will be in your home, transporting and caring for your mom. Hopefully, you can find a caregiver who has experience with dementia patients and will not be surprised or offended by her mood swings, delusions and fits of anger.
- Your other option is to place your mother in adult day care on a regular basis to give you some alone time to rest and regroup. It will be money well-spent and again, your siblings should help with the expenses. We live in a small rural community (less than 15,000) but are blessed with an excellent multi-level, continuing care facility.
- Research the support groups and medical specialists in your area. It is best if your mother can be seen by a doctor or nurse practitioner who specializes in geriatric care. There are many resources available for dementia patients and their caregivers in most metro areas.
- Closed captioning is a great solution to the blaring tv issue.
- You might want to read The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Related Dementias, and Memory Loss (A Johns Hopkins Press Health Book) by Nancy L. Mace and Peter V. Rabins. It will help your family understand and cope with your mother's symptoms.
I hope some of these suggestions are helpful and that you find the support that you and your family need during this challenging time.
There is more than one way to honor your mother and take care of her. In your situation I don't think it is under your roof.
Take care of yourself and good luck.