My mother was diagnosed with Alzheimer's in 2005 and has steadily gotten worse. When my father passed away in March of 2009, I became my Mom's primary caregiver. I am one of two children and am in an unfortunate situation that my sibling and I can not overcome our differences and provide care for our Mom as a team. Our situation has deteriorated to the point that my sibling is no longer involved in my Mom's care at all. Currently, my Mom is still living in her own home and my daughter and I stay with her and I have hired caregivers to assist me as well. They are great with Mom and I believe she loves both of them dearly, but this has become very expensive.
I am married and have a 4 yr old daughter to care for as well. My husband worries that I am stretching myself too thin taking care of my Mom and two residences. He's a truckdriver and is unable to physically assist me, although he provides a tremendous amount of moral support. I've not returned to work in order to provide care from my Mom and that is soon going to present a financial strain on my immediate family too. I'm so torn on what I should do. My Mom has been my best friend and she is most calm when she is with me. She looks to me in a similar fashion like she looked to my Dad. We are soon approaching a year of my Dad's death. I have been waiting in hopes that my sibling and I could overcome our differences and work something out to my Mom's best interest, but I think that reality has finally set in and that I am no longer disallusioned by my "hopes" for me and my sibling. Do I move her in with me? Space at her home would make it unrealistic for my family to move in with her; however, we have the space that could accomodate all of our needs. Is pooling our finances the appropriate thing to do as well? I just don't know how to do what is right for her as well as for my family.
Caregiving for a loved one with Alzheimer’s disease can often be a complex and heart wrenching process when factoring in all the elements, such as finances, direct care, family dynamics, etc. Despite the fact that you have met some roadblocks along the way, it sounds like you are doing a good job and giving her the best care that you can. This is highly admirable, and your mother is fortunate to have you for a daughter. However, you don’t want to run into the all-too-common caregiver problem: stress and burnout. Many caregivers are at risk for burning themselves out because they take on too much from the beginning. It is not unusual for family members to try to be heroes to their loved ones by taking on a range of responsibilities that include hands-on care and financial demands. At this pace you may incur undue damage to your health, the health of your family, your own financial situation, and other areas of your personal life. You are in a particularly fragile situation due to the family dynamics you mentioned. With that in mind, it is necessary to consider your options – how you can preserve yourself for the long haul while ensuring your mother’s safety and optimizing her quality of life. You mentioned that you have not returned to work in order to take care of your mother and that will present financial strain in the future. This is the optimal time to consider other options that could allow you to resume your own lifestyle while making sure that she is still receiving care. I strongly urge you to file a Medicaid application for your mother without delay. Medicaid is a public benefit insurance program that can help offset the high costs of care, such as most home care, adult day care, nursing home care, medical equipment, transportation, medications, etc. For more information, please contact 1-800-MEDICARE, or visit the Web sites www.medicare.gov and www.cms.hhs.gov. You also inquired about next steps, particularly your mother’s living situation. If you want her to move in with you, you should first consider what it might take to keep her safe. Families need to wonder about how to design a safer home, arrange for adult day services, find time for doctor’s visits, find room for home care aides, etc. And it is also necessary to consider that this might be a temporary move – if your mother declines further in the future, she may need to be transferred to a long-term care facility. If she were to be moved now, she may find it easier to adjust over time to the same environment rather than moving from residence to residence. Although what you choose for Mom is an entirely personal decision, you want to really think things through, keeping in mind your family’s best interest while making sure that your mother has a safe, reliable living situation for now and for the future. Although your relationship with your sister appears somewhat strained, you may be able to mend things, if only to serve your mother’s best interests. If you haven’t done so already, think about asking her to join you in a support group someday. Support groups are warm, supportive environments that allow people to let loose and be themselves. It is a perfect forum to release tension, discuss deep-rooted fears, and uncover latent emotions. It is possible that with the help of this type of group, you and your sister may be able to discover reasons behind your deteriorated relationship and work towards goals to heal yourselves and help your mother together. Best of luck to you in whatever direction you choose to take! Although your relationship with your sister appears somewhat strained, you may be able to mend things, if only to serve your mother’s best interests. If you haven’t done so already, think about asking her to join you to discuss family issues with a social worker or geriatric care manger; sometimes, input from a third party helps move things along. Or, consider asking her to join you sometimes in a support group. Support groups are warm, supportive environments that allow people to let loose and be themselves. It is a perfect forum to release tension, discuss deep-rooted fears, and uncover latent emotions. It is possible that with the help of this type of group, you and your sister may be able to discover reasons behind your deteriorated relationship and work towards goals to heal yourselves and help your mother together. Best of luck to you in whatever direction you choose to take!
Nina had many good thoughts. If your mom moves in with you, adult day care a day or so a week would give her the company of peers and give you a break. This arrangement could work for awhile. But you need to consider the long term. If she lives with you, and you pool finances, you may want to consider having a legal document drawn up, especially since you have a sibling who could cause you problems down the road. Also, if she needed to go on Medicaid, they want records five years back (of her finances), so you should keep very good records.
We, as caregivers, want to do what seems right in our hearts, but that can come back and bite us in the real world. So, please go into this with your eyes open. I hope you can find something that works for you all. Things will change as her stages of Alzheimer's change.
Please keep in touch for support and let us know how you do.
What Joe mentioned is very important and you would have more stress than you can handle. If your husband is not there often and you have a small child to look after, I doubt that you can do that in the long run even if you hire some caregivers to help. For example, if you need to take your child to the ER in the middle of the night and your Mom cannot be alone as invalid elder. What will you do? Call up your sibling? Call the neighbor in the middle of the night? Call the hired caregiver back? Your Mom may look ok now but she will get sicker to the point that you will have to handle both your Mom and your small child.
I will think it is wise to send her to an assisted living facility at some point so you can take care of your own child without the father being in the house often.
Think about all the situations and then decide what you want to do. I feel that at this point to handle the empty house after your Mom leaves her house is actually the easier part. The hardest part is to handle your Mom who will be much sicker and harder to reason with.
Dear LMM, I have little to add to what Nina and Carol said, but would like to mention a few other things. It's wonderful that you are willing to bring your mom into your home and care for her. The diagnosis five years ago suggests that your mom has changed some since then and those changes can be difficult to handle alone. This is a big job for a team of people, so I hope that you understand that you alone will be providing care 24 hours a day, seven days a week. It can wear you down and it will take you away from your other family members. I wish that you had a cooperative sibling to help you with this because it is a very demanding task. The daycare idea is affordable for one or two days a week and it will be good to socialize your mom a little outside of the family. More importantly, it gives you a little time for yourself. Don't use this time to get caught up on chores or you'll never feel rested. You really will need the break time for yourself to do things that you enjoy and get away.
You will need to evaluate your home for your mom's safety. Throw rugs, thresholds, hot water controls in the shower or tub, bath mats, grab rails, a shower chair and kitchen hazards all have to be considered. Exterior doors (in case of wandering) and stairways are other issues. Can hallways and doorways provide clear access for walkers or wheelchairs? A new environment can be very confusing for a person with dementia. Are there any exterior hazards in the yard? Pools, ponds, terracing and irregular surfaces can be dangerous.
In addition, co-mingling your mom's money with your own is a bad idea. If you can afford to consult a lawyer, there may be some things that can be set up if your mother is still legally competent to sign papers. Alternatively, if your mom can still sign her name, then you could write out her checks for things that she needs and have her sign them. She still appears to have control of her own finances in that situation, even though you are helping her. That's desirable in case your sibling thinks that you are improperly spending your mom's money. Keep receipts for everything and note the check numbers that correspond to the receipts. Be open with your sibling about what you are planning to do and be willing to provide proof of your proper spending. It should prevent wild accusations later. I sure hope that things go smoothly for you in this area.
Finally, think about the dwelling that will be vacant when your mom moves in with you. Are there expenses for rent or taxes? Perhaps electricity, water, sewer and other utility bills will need to be paid and what about security? Is the place likely to be burglarized or vandalized? If it's a rented apartment, where will mom's things go if you vacate it? Is a public storage facility a proper solution? It's another monthly payment to worry about. I'm not trying to discourage you, but I want you to realize that a lot of planning needs to be done before taking on this project. It can be very traumatic for you and your mom if you discover a few months later that you aren't able to handle this job alone.
I hope that I've identified some details for you to consider in the plans that you are making. I wish you much success and hope that you get a lot of support at home, too. You will need it. Keep us posted on your story since sharing information helps all of us. Best Wishes, Joe
I think it is nice that you want to move her to your house. I understand that caregivers are expensive at home given more than 12 hours or even 24 hours. So being with you in your house can help. But this does not mean you stop hiring the caregivers. You definitely still need help. The gain is you can stay overnight for her so you don't need to hire anyone overnight when she is sicker.
It depends on how sick she will be. For stage 4-6, it is ok to be at home. But as she gets more progressive, she will have harder time for you to deal with. Eventually you may want to consider an assisted living facility or nursing home. One way to do it is to go all the way until hospice. Then you could have home hospice for her or go to the hospital for hospice.
One factor you need to consider here is how you will deal with it in the future if you really have to move her to another home? In my experience with my father-in-law who has stage 6 AD, he gets agitated now if we move him but we have no choice this summer. It is too expensive to have home care and we cannot live with him as we are too far away. So we are moving him to the assisted living home this summer. We plan to move him now before it is too late to move him - if he is too idle in the end stage/stage 7 without talking or walking, it would be harder to relocate him.
Do you plan to take care of her until the end stage? Also you will never know until the time comes when you would feel overwhelmed. It is an emotional path and she is going to forget a lot about you and her past. My FIL has already forgotten his past such as our wedding or his late wife's death and even his own old office at the university as a professor. He still likes to play and talk in his own world. He still likes to go out with us to have coffee and walk around the block when we are in town.
In a way, I have to say it is better to go to the assisted living facility while she can still plan things. The earlier the less trouble later on. If you wait and want to help her in your house, then you need to take the chance later on. We are taking this chance that we have waited so long - my FIL has had 24 hours home care for 2 and half years now. We could have done so much earlier to save money, but my husband wants to be cozy with his Dad at home for now. We are on the waiting list as #3.
It is personal and up to you. I would think that you may want to send her to an assisted living facility for Alzheimer's one day given you have a very young child. Being in your house, you would have to hire caregivers and the hours for hired help will be more and more as your Mom gets sicker. You would need to bathe her or cook for her or dress her or play with her. It is very demanding. Actually the elder sometimes perfers one person to depend on and that would be you - 24 hours!
I will say it is hard to know if you are doing the right thing. It sounds very nice but it will be quite difficult and it depends on how strong you are and how much help you will get.
Just my 2 cents,